Welcome to the Advice part of this website. The North Shore Hospice Society has ventured to provide this information to you and your family and friends at this difficult time, or in anticipation of increasing complexity of your situation.
I am a Family Doctor from the North Shore who has worked in Palliative Care for many years; in my practice, and at Lions Gate Hospital. Through my experience I have consulted many and varied resources, and developed my own way of providing patients with what I think is a sensible but sensitive discussion of topics that might be difficult to think about at this time.
The topics range from the practical to the ephemeral. Often with limited time in the office it is difficult to ask all the questions or say all that one would want, whether you are a patient, family member or a doctor. I have taken some time to elaborate on some of these ideas, and hopefully these discussions can guide you toward resolution or better coping with some of these issues.
Please note, at this point in time, these discussions do not relate to specific disease processes or medical situations, which could never be fully discussed in all their variations as they apply to an individual. Specific medical advice regarding your disease, symptoms or medications should be sought from your doctor in a timely manner.
On the other hand, we are happy to hear from you regarding this content and its usefulness to you, and whether there are any other topics you would like us to cover in this section. Please contact us.
We will strive to update this section on a regular basis. Please feel free to share any of this information with family or friends as you see appropriate. I hope you find this helpful on your journey,
Dr. Jan McCaffrey
Each section listed to the right has specific topics associated with it. Once you click on the subject, these topics are revealed. There is much to think on in these pages, and it is not meant to overwhelm. You may want to simply explore the site, and return over time as often as you need, to read what you need.
Please also explore the Patient section of the Advice Section for a different perspective, and to know what your ill friend or family member might be reading.
If you see anything we have not covered in these pages, please contact us, and I will write it!
This part of the website deals with the practical aspects of comfort. These issues will come up with the patient and family, and their health care team. Often an occupational therapist or the home care nurse is involved in setting up some of the equipment and environment most helpful to the patient, and this is addressed once a patient is referred to the Palliative Care Program and Benefits Program.
There are some things that family and friends can do to help a person feel comfortable, whether that person at home or in a hospice or hospital. People with serious illness often lose control over many aspects of their day-to-day care, so as much as possible, find out what the patient would like before helping out.
Many people will have personal preferences about receiving physical care. Does the patient feel comfortable being cared for by a man? A woman? How does the patient feel about receiving care from family members or a friend? Sometimes patients are comfortable receiving certain aspects of care from family members, such as mouth or skin care, but would prefer that more intimate types of care, such as bathing, be provided by professional staff.
What follows are ideas developed from our experience in for providing “comfort care” to patients. Remember that if a patient experiences severe pain with bodily movement, or in an area being cared for, a "breakthrough" dose of their pain medication (i.e. an may be required about 20 minutes before you attend to them. Patients become very adept at telling you they may need this, but it is always safest to ask.
For many people, to feel clean is to feel comfortable.
Illness tends to make people perspire, making their hair damp and sometimes tangled. Brushing someone’s hair regularly can be a thoughtful gesture.
Hair can be washed in the shower or tub, at the kitchen table with a basin, or in bed surrounded by soaker pads to prevent the bed from getting wet. Another option in bed is to gently move the patient to the head of the bed so that their head is slightly over the edge. Cover the bed with garbage bags to keep it from getting wet and place a pail on the floor below to catch the dirty water. Before you start washing someone’s hair, organize towels, containers to hold clean and dirty water, and the patient’s regular comb or brush. Then, gently shampoo and massage the person’s head.
Haircuts can also be given at any place of care. Consider asking the patient’s regular hairdresser to come out to cut the patient’s hair.
The occupational therapist with the North Shore Palliative Program will recommend what equipment you might need to help with bathing. Tub baths and even showers usually get progressively more difficult, but while they are possible, buying or renting equipment, such as grab bars to help patients move in and out of the bathtub or shower stall, will make these activities safer. A bath chair may help people who cannot lower themselves into the bath or stand long enough for a shower. If the patient is able to get into a bath, the water should not be too warm, or it may make the person sleepy and weak, making exiting the tub difficult. Use soap sparingly as it tends to be drying on skin. A wet, warm washcloth is usually all that’s necessary to clean the face.
Sponge baths can be given to someone who is not able to get out of bed. You’ll need a washcloth or sponge, lightly soaped water in a bowl or bucket, and a towel. Start at the face and work downwards, being careful to cover parts of the body that are not being washed with a light sheet or towel. Then progress to the arm and side of the body furthest from you before moving to the arm and side closest to you. Follow the same pattern for the lower half of the body. Finish washing the patient’s front by washing the genital and anal areas, being sure to change the water and cloth afterwards. If the patient is able to turn, support them with pillows, or another person, and wash the back. A full bath is not necessary every day, but the face, underarms, hands, genital area and back should be washed daily.
People who are not eating and drinking very much will likely have dry skin. Lotions are often very soothing on skin. Avoid alcohol-based products, as they are drying. Heavily scented lotions and creams can sometimes be annoying to patients and should also be avoided.
Most people with advanced illness will experience an uncomfortably dry mouth. A regular mouth care routine should be followed three to four times a day and more often if the patient requires. The routine will help keep the patient more comfortable, and also help ensure that medication given under the tongue can be properly absorbed.
Some patients will be able to brush, floss, and rinse their mouth as normal, but if they are not able to do so, there are other options. Small toothettes, moistened with water, can be used to clean and moisten the mouth. These bits of sponge come on individually wrapped sticks that can be bought in health care stores, or may be available in hospice or hospital. Avoid rinsing the mouth with store-bought mouthwash, as most of them contain alcohol, which is drying to the mouth. Dry lips can be moistened with petroleum jelly or equivalent. Health care stores may also carry a product that can be sprayed as a fine mist to moisten the mouth.
Dentures should continue to be removed and cleaned on a regular basis. If the patient has lost weight, dentures may not fill as well, causing discomfort. Some people choose to leave their dentures out for this reason. Some people like to suck on ice chips, a clean wet facecloth, or chew gum to relieve a dry mouth. If the patient is able to drink, keep liquids nearby at all times. However, if the patient cannot safely swallow, they should not be given fluids, as even small amounts of water or liquid can lead to choking. If the patient is unconscious, family and friends can use toothettes to moisten the mouth with water, but even then, all excess water should be carefully removed. If the patient’s sleeping room is very dry, a humidifier may help relieve some of the dryness in the mouth.
Shaving, and cosmetics and facial esthetics continue to be important to some men and women. In addition, some medications cause women to grow more facial hair and they may want this to be removed. It is best to check with the patient regarding their needs in this area.
If the patient is receiving oxygen through tubes placed just inside each nostril, the inside of the nose may feel dry. Petroleum jelly can help make the nose feel better. Vaseline is not recommended for nose care when oxygen tubing is being used.
Patients may enjoy a manicure or a pedicure from friends or family. Having clean,
cared for nails sometimes makes a person feel more comfortable. Caring for nails is
also a chance to enjoy someone else’s touch.
Someone who cannot get out of bed needs to change position every two hours to minimize the risk of bed sores. Bed sores are painful, and slow to heal, so the best approach is to prevent them. Moving someone from one position to another is easier with two people helping. If the person is lying on either a cloth absorbent pad used to protect bedding or a turning sheet, the job will also be made easier. Remember to ask if a breakthrough dose of pain medication is required.
Before helping someone change position in bed, move the bed into a reclined position, or as fully reclined as the person’s condition allows. The bed should be lowered slowly, as rapid movement of the bed can be uncomfortable for patients.
Turning sheets are small sheets that run only from the person’s head to their buttocks. Two helpers grab onto the four corners of the pad or sheet and are able to lift the person up, down, or sideways on the bed. Be sure that all wrinkles are smoothed out of the sheet because wrinkles cause friction and can be painful to the skin. Pulling the sheet from the top and bottom should remove all wrinkles.
Ask your homecare nurse or occupational therapist to teach or demonstrate to you how to properly move the patient. Try not drag the person across bedding, as this is more painful than lifting.
If the patient is spending most or all of the time in bed, regular bedding changes are important. If the patient is unable to leave the bed, it may be helpful to change half the bed first, then help the patient turn, and change the other half. Several pillows should be used to give the patient support during this process. Extra pillows can be used to support the patient’s back, and placed between the legs while the patient is lying on their side.
Loose comfortable clothing that is easy to put on and take off is ideal. Waistbands on pants may feel too loose or too tight and sometimes a tied waist offers a good solution. Shoes or slippers may need to be in larger sizes because of swelling of the feet. Sometimes people need to cut the back of their slippers out to make enough room for their heels. Shoes that can be put on without bending down are better than those that need to be tied. People should be offered clean, fresh clothing on a daily basis.
A person with an advancing illness will not eat as much as they once did. While it is important to use strategies that can increase interest in eating, rather than become too focused on increasing the amount of food a patient takes. One of the simplest tactics is to offer small snacks throughout the day, and to make these snacks high in protein and calories. Cream soups and ice cream are good alternatives. If the person has developed a distaste for meat, then look for high protein alternatives such as eggs and fish.
Recognize that people with advancing illnesses often become full quickly, sometimes after just a few bites of food. Do not push people to eat more, as nausea and vomiting may result. Despite your concern, focus on making mealtime a social occasion, and avoid making mealtimes a battleground about eating. Relying on favourite foods can be a good way to ensure the person will be more likely to eat. If the person is being cared for in a hospital or other facility away from the home, ask the medical team about bringing in foods that are not available in that setting. Above all, remember that rejection of food is not a rejection of the caregiver.
One of the key issues with medications is keeping track of the medicine that is taken, and keeping the medications themselves organized. Ideally these tasks should be organized by a single person, so the emphasis for anyone else who visits should be on working within whatever system has been established. If you are assisting the patient to take pills or tablets at the appropriate time, there are a few simple rules to follow:
Medication is not always swallowed. It can be held under the tongue and absorbed through the lining of the mouth, either as a small amount of liquid or dissolvable tablet.
Medicine can also be delivered rectally with a suppository, through the skin with the help of a patch, or, under the skin through a method called subcutaneous injection or infusion. To help someone with a suppository, you will need a glove and petroleum jelly or some other lubricant for the anal area. Suppositories should be well lubricated and pushed as far into the rectum as the gloved forefinger can reach.
To use a skin patch, follow the directions on the packaging and change the patch regularly, usually about every three days. Try not to get the patch wet. Do not cut or fold patches unless instructed to do so.
Subcutaneous infusion or injection sends medicine into the body just under the surface of the skin. This can be done through a needle inserted under the skin or through a system of syringes and pumps.
Any of these methods are typically explained and or demonstrated to you by a health care professional. Make it easy on yourself and ask if you are unsure.
For some people, the prospect of either giving or receiving assistance with toileting can be a source of embarrassment. A matter-of-fact approach is best. If the patient is able to get to the bathroom, consider whether the environment is helpful:
If the patient is unable to move to the bathroom, there are many other toileting options, including:
Commodes. These are essentially chairs on wheels with a hole cut through the centre of the seat. A collecting pan is attached to the chair and can be removed for regular emptying. Commodes can also be placed over a toilet.
Bedpans. These are plastic or metal pans that are placed under the patient’s body while the patient is in bed. Bedpans come in several different sizes. Many people find it difficult to release their bowels or bladder while lying in bed, so patients should be given lots of time to use a bedpan. Lifting the person’s head slightly with pillows or inclining the bed may help the person feel more comfortable using a bedpan.
Collection Bottles (also called urinals). These are small bottles that men can use to collect urine.
Catheters. These are tubes that health care professionals will insert into the bladder through the urethra. The tubes are attached to a drainage bag, which is strapped to the leg, or hung on the side of the bed. Washing hands before and after handling the catheter and related equipment is essential to help prevent infection. The patient’s genital area should be cleaned twice a day and the catheter itself, which exits the body and attaches to the collection bag, should be cleaned at least once a day with soap and water. The collection bag should be emptied every day and cleaned with a vinegar-water solution.
Adult diapers. These can be purchased from a health supply store. Diapers should be replaced as soon as they are wet or soiled to avoid skin breakdown and risk for bed sores. The patient’s genital area should be cleaned using soap and water, working from front to back, after a diaper is used.
Some patients may leak small amounts of urine between regular visits to the bathroom. This is called incontinence. Remedies include absorbent pads for bed linen, menstrual pads attached to undergarments, adult diapers, or, for men only, external (no tube inside the body) condom catheters. Condom catheters are latex sheaths, which are placed over the penis. The sheath has a tube, which is connected to a drainage bag. The bag can be attached to the leg if the patient is mobile or can attach to the bed if the patient is unable to move around. Condom catheters can be used occasionally to provide freedom on outings or they can be used as a regular option. Once again, absorbent pads are used to soak up urine or feces, and should be replaced as soon as they are wet or soiled.
Preparing for the death of someone close to you can seem insurmountable, and full of conflicting feelings. How you feel about this will be influenced many factors, not the least of which are; the length, type and progression of the illness and the patient’s and family’s attitude to illness and death. You may find yourself wishing for death and the relief it may bring for the patient, while simultaneously fearing death and your own loss.
Sometimes a serious illness is acknowledged, but there is anticipation of recovery. When it is finally understood that an illness is terminal, one must mentally prepare for death, but doesn’t know where to start. Although unable to immediately sort out emotions, given time, a person will likely begin to start grieving what the loss will mean to them – lost dreams, lost family, and loss of a cherished friend.
This section provides some tips on how to take care of yourself during the stressful time of being a caregiver.
Caring for a family member or friend receiving palliative care is demanding, even though you probably would not have it any other way. Anticipating and planning for one’s limits prevents it from being destructive. Whether you are caring for someone full-time or just occasionally helping out, you need to guard against becoming mentally and physically exhausted. Taking time for yourself is often easier said than done, but remember that pushing yourself to do more, with less rest, may put you at risk of becoming sick. Ultimately, you might become unable to care for the person with illness and you may in turn cause additional stress for the person who is ill.
Take a Break
This is absolutely essential. The key is to identify the caregivers and palliative care team members who can provide help and to schedule it regularly. It is also critical to understand that a palliative care patient’s needs can increase unexpectedly and that when they do, you must ask for help. You cannot, and need not, do this by yourself.
Many hands make lighter work. As the primary caregiver, you have to look at yourself as a combination of foreperson and ringmaster, and one of your most important jobs is to schedule a rotation of caregivers so that the load on any one of them is manageable.
For a particularly graphic account of the toll on a caregiver, you can go to the segment of Noreen McInnes's video.
One of the best ways to ensure that you do not run low on energy in your role as a caregiver is to take regular breaks and do something that you enjoy. At least once a week, you need to take time for yourself, whether that means going to a movie, taking a walk, or going for a bike ride.
Take sensible advantage of the assistance that friends and other family members may want to provide. While they may sincerely wish to help you out, they may not know how to go about doing so. Provide friends and family with specific suggestions as to how they can be helpful. For example, you might want to ask them to take you out to a restaurant or go for a walk with you, so that you have time to talk away from the care environment. Maybe a friend could pick up some groceries for you, mow the lawn, or take the dog for a walk, or conversely, allow you to do these things, while they watch the patient.
Your hospice or palliative care program may be able to ask a respite worker to come into your home to give you a break. If available, a hospice or palliative care ward bed can be used for respite for a few days if it is jointly determined with your health care team to be of value to the patient and yourself.
Whether you are caring for someone in the home or providing occasional care in hospital or hospice, you will likely be juggling numerous obligations such as caring for children or aging parents, and looking after other matters related to home life.
People deal differently with these competing demands. Some people find that going to work gives them a break from their caregiver role and helps them re-energize, so that they can better focus on the person who is ill when they get home. Others may find that the demands of work outside the home combined with care giving responsibilities are too much to manage. Still others may feel stressed because they cannot afford to leave work in order to care for someone. If you are considering taking time off work to care for someone, you should know about Canadian government benefits (link) that are available to you as a caregiver.
Caregivers often say they put their lives “on hold” while they look after someone. If you are caring for someone, try to stick to a schedule that ensures that you eat and sleep regularly. If you are always pushing back your bed time and eating meals hours after you first became hungry, your health will suffer.
Keeping simple snacks on hand might be one way to ensure that you are always able to eat regularly.
If you are feeling tired, you might want to plan to sleep whenever the patient is sleeping, even if that means leaving some chores unfinished.
Draw upon whatever resources are available to you to help you with household tasks so that you do not become exhausted.
If you need to visit a doctor or clinic for a health concern, try not to put off the visit until you have 'more time', you may never find it! Ask for a family member or friend to help.
If in your role as a care provider you are required to help lift, transfer, or reposition an ill person, you will want to keep your back healthy and strong to decrease the likelihood of a back injury.
Exercise such as walking or swimming, and abdominal exercises, can increase strength in your lower back and help your muscles function better.
When you are lifting someone, try to let your legs do the work, keeping your back straight, tummy tucked in, and bending only at the knees. Keep the person you are helping to move as tight to your body as possible and avoid lifting and twisting at the same time.
If you are sitting for long periods at a time, make sure the chair has good lower back support or create one with a pillow or rolled towel in the small of your back. Your knees and hips should be level to the floor.
If you need to stand for long periods of time, alternate one foot on a low footstool to take some of the pressure off your back.
If the patient is not able to lift much of their weight at all, you may want to do the major moves – such as helping the person move from the bathroom to the bed – when someone else is there to help. It is much easier for two people to help someone move around than it is for one person.
If the patient should fall down, your first instinct may be to help the person get up again. If you are not very strong, it may be safer for the patient to remain on the floor until you can get help from someone else, as lifting someone up off the floor can be very difficult. You can put a pillow under the patient’s head and help them into a comfortable position until help arrives.
If the person with illness has become confused, they may become argumentative or in rare cases, even combative. You should get help if you feel that your physical safety of that of the person is threatened. They will require reassessment, and may need a change in medication or further changes in their care.
Grief is an emotion that is experienced by both patients and family members in trying to come to terms with a life-threatening illness, and the inevitability of death.
Family members are grieving losses that have already occurred as a result of the illness, such as a loss of a sense of well-being within the family, and changes to how the family functions, especially when the patient is not able to continue in their usual role within the family.
Family members may also look ahead and grieve for the person they are going to lose and the life they would have had with them.
Patients’ grief is quite similar, in that they may also mourn the losses that have already occurred, such as jobs, health, and expectations of longer lives.
Sometimes family and friends feel isolated in their grief and may hesitate to raise their fears and feelings with patients in order not to burden them. However, many patients who are experiencing their own grief would be quite willing to talk about what is happening to them, as well as what might happen after they are gone.
Patients who speak openly about their own dying are more likely to want to have this type of discussion, which may make friends and family members less isolated. See Talking to Patients.
There is another benefit to expressing feelings of grief before someone has died. In general, the more a person can grieve in advance of someone’s death, the better that person will cope after the death. To an outsider, acceptance of death may seem to come too quickly after death occurs, but close family and friends are often gradually preparing for what life would be like without that person throughout the course of the illness.
When you care for someone near the end of their life, they will be the focus of your attention, no matter where you are or what you are doing. Many regular social activities must be dropped in order to spend as much time as possible with the patient. However, friends and family have their obligations, so loneliness can be reinforced, even in the presence of friends, especially if those friends are unsure of how to offer support.
Demands on other family members can bring their resentment, as some relatives feel they are being asked to shoulder too much responsibility. Some family members may resent the patient for getting sick and making things difficult for others.
Venting these feelings is sometimes all that is needed in order to feel better. If the patient is at home, caregivers may want to find a reason to get out of the home and spend some time doing something enjoyable. People need opportunities to take breaks and re-energize. If friends have offered to help, take them up on the offer and go out for an evening with them or ask them to spend time with the patient to give you a break. No one, not even patients, can focus on illness all the time without becoming emotionally drained.
Near the end of a life-threatening illness, family and friends may feel abandoned, especially if the patient withdraws and speaks very little. Social withdrawal sometimes happens when people are near death, and should be seen as the patient’s way of preparing for death, not as a rejection of those around them. Please see When Death is Near.
Advanced illness usually brings about changes in the household, as other family members are required to take on new and additional responsibilities. Families can feel threatened by the ill person’s absence in directing finances, household chores, or other tasks that they had routinely completed. If a parent is affected by illness, the remaining parent may feel as if they are already functioning as a single parent. Children may also feel anxious when dealing with changes in the household. It is important that children be given detailed information about who will take care of them and what changes they should expect in their day-to-day routines.
Please see Talking With Children.
Anxiety is also related to the uncertainty of how the illness will progress and when death might occur. Even health professionals who work with people with advanced illnesses on a daily basis can be surprised by the path an individual’s illness takes. Not knowing what might happen next is a considerable strain on family and friends. Some family members are afraid to leave the room in case the person dies while they are away. Conflicting emotions are felt when this same desire to stay with the person around the clock brings out feelings of resentment for having to do so.
Take advantage of the support resources around you; your doctor, any counsellor or therapist you may have, the community social worker or home care nurse, or a private and regular debriefing with the caregiving family and friends on the simple topic of changing roles and responsibilities, can ally some of these fears and anxieties.
Coping with the eventual loss of a family member or friend, while continuing to care for other family members, is physically and emotionally exhausting. Caring for someone who endures a long period of decline before death is also exhausting. If possible, you should try to leave some energy in reserve, pacing yourself in your care giving. Otherwise, you may not be able to provide support to the patient throughout the entire course of illness. Family members need to give themselves permission to take care of themselves, as well as the patient. Scheduling time to enjoy some aspect of life each week is one way to try to gain back some energy, and practice self-care.
Please see Caring for Yourself.
Finding someone to blame for a terrible situation can be a way of making sense of something that seems to make no sense. You may be angry that a diagnosis was not made earlier or that different treatment options were not explored. Or, you may be angry because health care providers do not seem to care or do enough for the patient. This anger may actually come from feelings of guilt for not being able to spend more time caring for the patient yourself. Sometimes anger is a rational response to a situation, but other times there are underlying reasons for the anger, such as guilt, envy, or sadness.
If anger is preventing family members from spending quality time with the patient, visiting a health care professional who can help sort out reasons behind this anger might be a good idea.
Family and friends may also have feelings of anger toward the patient, especially if relationships have been distant or characterized by conflict in the past. Some people want to take the opportunity to resolve long-time disputes or lingering conflict before death occurs, but for others, the act of reconciliation is just not realistic. People who are uncertain about whether to bring up unresolved issues with a patient may want to consider that anything unresolved may intensify for them after death. Sometimes reconciliation is worth trying. How to do this is usually limited by our fear of doing so. Saying something like, "I just have to say before I go today that I am sorry that this was a problem for us in the past.", casts no blame on either party, is likely completely honest, and opens a door for discussion if the patient is ready to do so. They may simply think about it and address it another time. If not, then you know you have done your best, and do not have to carry that burden with you. Family members may find it helpful to speak with the health care team if they have concerns about relationships within the family.
Family and friends sometimes don’t know what to do with their sadness. Is it okay to cry if the patient is in the room? Is it okay to cry when friends casually ask how things are?
Crying is a normal way of releasing emotion, although some people feel more comfortable crying in private. The best response to whether it is okay to cry in front of a patient is to think about the relationship before the patient became ill. If holding back tears was the usual response then, it probably feels natural now. On the other hand, if the patient was comfortable with tears then, crying is probably okay now. In response to the question about bursting into tears, friends will likely recognize that people need to express their sadness and that tears can come on quite suddenly. In general, letting emotions come out is probably a healthier response than trying to keep them inside.
Family members may feel so much sadness that they do not want to socialize with people. Watching someone’s health gradually decline is an emotionally draining task – it is not always possible to “cheer up” or feel better in the company of others.
Sometimes people need help in figuring out whether they are feeling sad or whether they are experiencing clinical depression. People who are depressed cannot usually get out of it without assistance. Depression is a medical illness that is believed to be related to some of the chemicals in the brain, called neurotransmitters. Unlike grief, depression involves pervasive feelings of helplessness, hopelessness, worthlessness, and persistent thoughts of suicide. Check with a health care provider if sadness seems to be constant and making ordinary tasks difficult. See the reading list for books and links for assistance with grief.
Family members and friends often feel guilty when someone is diagnosed with a lifethreatening illness. Some people will remember the patient feeling tired, for example, and regret that they didn’t tell the patient to go to a doctor. They may remember previous arguments or disagreements and regret things that were said. They may also regret making demands on the patient’s time and energy, feeling that they somehow contributed to the onset of the illness. Generally, these feelings of guilt are not based in reality, as the factors that influenced disease are often unknowable.
Moving away from home into a hospice, hospital or other care environment often means sleeping in a single bed. Couples have less opportunity to touch or hold each other and partners miss that physical closeness. Solutions may include putting two beds together, especially if the person who is ill would have difficulty making room for someone else on a single bed. Sometimes providing children with an opportunity for close physical contact to their mother, father or other loved one is comforting. There is no need to feel embarrassed about this need, it is natural, and one can’t go back and do it differently another time. So if it suits you and your partner or children, go ahead and make the request.
The healthy partner in a relationship may also miss sexual contact and feel guilt for feeling desire when the ill partner is suffering. Such desire is normal. While intimacy may play out in a different fashion in the context of palliative care, any form of closeness between couples often provides an ongoing opportunity for expressions of affection, devotion, and love. Gentle stroking of any part of the body that promotes good feelings is a great gift that the patient can receive from their partner, and perhaps give in return. Lying next to the patient in bed or sitting behind the patient and enfolding them in their arms allows for great intimacy with minimal discomfort. Time alone to explore intimacy is an important aspect of end-of-life care. Couples may want to put a sign on the door requesting privacy.
Family members and friends often experience conflicting emotions when death nears. Death may be seen as bringing relief to the patient, so friends and family may hope that it comes soon. On the other hand, one may feel unprepared emotionally for the person to die and hope that death will be postponed until you feel ready. Family and friends are also trying to prepare for a future without the patient’s presence and may feel a need to withdraw from the patient emotionally. At the same time, one may want to feel a closeness at the time of death that will bring peace later in mourning. This push-pull effect of letting go while simultaneously reaching out and trying to hang onto the person who is dying is a difficult challenge for most people. No one is ever fully prepared for the death of a loved one, but the emotional work that happens before death can make working through emotions during the grieving process a little bit easier.
Death confronts us with an ultimate loss and the fundamental unknowable. Great religions have examined these issues for thousands of years. Death is universal, yet every death is unique. There are no rules, and no easy protocols. Yours will evolve depending on your life experience, values, and the help that your receive. In this way, you have already been taught, and will teach those around you, and help them prepare for their turn.
From our own experience, we can say that clergy of all great religions are used to dealing with death and are almost invariably willing to help you through it should you wish it. As well, the connection death can create between all those involved has an intensely spiritual quality.
People can be nervous about talking to a family member or friend who has a life-threatening illness. It revolves around whether to acknowledge or ignore the seriousness of the illness when in conversation.
The best advice is to be yourself and be open to talking about whatever the person brings into the discussion, and to be sensitive to the cues the patient may offer. Trying to ignore the illness altogether is probably going to feel awkward, but not every conversation needs to be about the illness or its progression. Most patients will guide the conversation as to what they’re comfortable talking about.
There is no special vocabulary for talking to people who are receiving Palliative Care. There is nothing wrong with talking about your day, a movie you’ve seen, or the vacation you just had. Think about what you would have talked about together before the person was ill, and start there. Feelings of discomfort about what to say will fade as you spend more time with the patient.
In an effort to protect the patient, you may hesitate to talk about the seriousness of the illness. Although shielding your friend or family member from sadness or worry may seem like a good idea, avoiding the topic altogether may make patients feel isolated and lonely. If they are raising fears about the future, acknowledge them and encourage discussion. Saying something like “tell me more about that” is one of the most helpful phrases you could ever use in any difficult situation, and is much more helpful than responding with silence.
Couples sometimes protect each other from their worries, trying not to add to each other’s burden. In a close relationship, however, the two people probably have similar concerns about what will happen when the other is gone, and find great relief in knowing they are going through the same emotional challenge. Rather than burdening each other, open discussion allows mutual support.
Even though people should try to be themselves at the patient’s bedside, there is still a need to be sensitive to the difficulties the patient is facing. Certain discussions are likely better held away from the patient’s bedside. For example, if family members are arguing or strongly disagreeing with each other about an issue, these discussions need to take place out of reach of the patient’s hearing, since they may add unnecessary stress to the patient’s life.
Patients will likely lead conversation away from subjects that make them uncomfortable. Let the patients control where the conversation is heading and recognize the hints they may give that signal they no longer want to talk, such as “I’m feeling tired,” or “I think I’d like to rest now.” Not every patient will be able to put their experience with illness into words, and patients who seem hesitant to explore their feelings should not be pushed to do so.
Visitors who can’t make sense of what the patient says should share these words or phrases with other family members or friends who might have insight into a possible metaphor or past experience of the patient. Family and friends can sometimes find significance in what the patient has said and later, these words may come to hold great meaning.
Patients who are nearing the end of their lives may want to talk about what they’ve seen or accomplished over a lifetime. Listening carefully sends a message to the patient that their words still hold value, and people care about them. Sometimes the patient’s words or meaning are not clear, and it’s alright to say something like “I’m trying to understand, but I’m having trouble right now,” so that the patient knows you are taking care to listen. If the patient is becoming frustrated because you can’t understand them, family and friends can help by offering to bring up the subject again later, when things might become clear.
Sometimes patients will make comments about things they see in the room that are not really there. They may talk about what they are seeing or even speak to their hallucinations. If the patient is not upset by the hallucinations, there is no need to correct them or point out there is nothing there. Sometimes people who are very near death make reference to people who have previously died, saying things such as “my father is waiting for me.” These types of comments should be acknowledged with supportive words rather than doubted or questioned. It is important, however, to tell the health care team if you notice a patient is becoming confused, since confusion can sometimes be reversed through assessment and treatment.
Patients often experience confusion as a life-threatening illness progresses. Clocks or calendars can be brought in to help patients remember what day and time it is, but patients may still be unsure of where they are or who visitors are, even if those visitors are sons and daughters or life-long partners. Family members will naturally be distressed by the lack of recognition, but if possible, they should provide calm reassurance to the patient that everything is alright and perhaps take part in conversation, without insisting on being recognized.
Visitors can often be alerted to a patient’s anxiety by watching the patient’s face. If someone’s eyes are darting back and forth and the person seems anxious, there is no need to wait for the person to put that anxiety into words before offering gentle reassurance or acknowledgement. “How are you doing? You seem different today,” might be one way to approach a person who seems distressed and in need of support.
Sometimes people who are nearing death seem to want reassurance that it is okay for them to die. “It’s okay, you can go now,” or “We are going to miss you terribly, but we will be alright,” are words that may lead to a sense of calm or acceptance in the person who is dying. Patients who have been interviewed about dying sometimes say they feel they cannot die while a family member is still convinced they will come home one day. Sometimes the dying person may feel that they are the glue holding the family together, so letting them know that the family will continue to work to stay intact can provide reassurance and a sense of peace.
In the hours before death, patients may be sedated or no longer conscious. Family and friends should feel free to speak to the dying person in any case, and touch them if they feel compelled, such as holding a hand, or stroking an arm or forehead. No one can be sure whether the words will be heard, or touch will be felt or not, but even the act of speaking to them can provide comfort to family and friends who wish to say good-bye.
Visitors are not caregivers but they can be very helpful, especially if the patient is
confined to a bed:
As the patient’s condition worsens, they will be less able to take part in conversation, but this does not necessarily mean that visitors should stop coming. Patients may still enjoy the presence of family and loved ones and the sound of their voices, even if they are not directly involved in the conversation. The key is to do what the patient has asked, what the family requests, or what you think the patient would want.
Sometimes, people who are seriously ill do not want any visitors other than immediate family. Even long-time friends may be told that visitors should not come. The person who is ill may feel too exhausted to visit, and may feel embarrassed about physical changes that have occurred. While this may be upsetting for well-intentioned friends, it is quite common and should not be taken as a personal comment on the closeness of the relationship. Such wishes should be respected, as the comfort of the person who is ill overrides other issues. Sending a personal letter or telephoning with a message to be communicated to the patient is one way to express some of the things you wish to say.
Each section listed to the right has specific topics associated with it. Once you click on the subject, these topics are revealed. There is much to think on in these pages, and it is not meant to overwhelm. You may want to simply explore the site, and return over time as often as you need, to read what you need.
Please also explore the Friends and Family section of the Advice section for a different perspective, and to know what your friends might be reading.
If you see anything we have not covered in these pages, please contact us, and I will write it!
The hardest thing for a patient to hear, and for a doctor, health care professional, family member or friend to say, is that you need palliative care. It marks a point in time in a person’s life where the focus of effort is quality of life in the face of a disease that cannot be cured.
It is necessary to hear this message so that you can make informed decisions about disease treatment, symptom management, end of life care and how you want to spend your time in the coming months.
Palliative means that regardless of the nature of your disease, you are coming into a phase of your illness and life where:
The Role of Palliative Care: The primary purpose of palliative care is to ensure the remainder of your life is dignified and as comfortable as possible.
How long do I have to live? It is difficult to predict when a person diagnosed as palliative will die. Much depends on the disease itself, how long you have been living with the disease, other illnesses, and serious concerns such as weight, nutritional status, presence of organ failure, current infection, bleeding tendencies and emerging medical conditions.
Months to live: In general, when you are stable month to month, you have months to live. During this phase, you may notice little change in function other than increasing fatigue and gradual loss of appetite.
Weeks to live: When you are changing weekly, you have weeks to a month.
The Final Stages: When you become bed bound, and unable to do any activity, it usually means you are in the final stages. When organs start to fail, the time left quickly shortens, especially if the kidneys, heart or lungs are affected. If your condition is deteriorating every 2-3 days, you have days to weeks to live, and if changing daily, then hours to days.
Appetite: Gradually, your interest and ability to eat and drink will decrease. Initially this causes a flurry of concern as everyone tries to feed you!!, but then appreciates you are truly dying and this process is irreversible. This stage can go on for some time, especially if there is no overlying or acute medical event. Your caloric and energy requirements are few if you are spending all your time in bed.
Consciousness: When your intake is reduced to sips or simple mouth care, your state of consciousness may start to shift to drowsiness or confusion, which can be an expected part of the experience close to death. Medication may or may not be necessary during this time. Family, friends and your health care team would be with you in some combination most or all of the time and your comfort, would be their utmost concern.
Incontinence, Dependence: As your illness progresses, you will need to rely on others for much of your care, including personal hygiene and assistance in going to the bathroom. Elsewhere in this site, we explain in more detail the care issues likely to arise and how those around you can best meet them.
Pain: Almost universally patients are concerned that they will be in pain, and fear it will not be treated properly. You health care team is there to make sure that, if anything, pain will be treated if present. This is both an art and science, and not simply “more morphine”, or “going to the hospital”. Great effort goes into understanding the nature of your pain, and the best measures to meet it. There is some calculated trial and error to ensure the right drug or method of relief is used to the greatest effect for each patient. As a patient responds in their own way to medication, and there is no test to be done to know what will work, a detailed assessment, close observation and periodic changes will be recommended. This is not guesswork on the part of the team, it is individualized treatment. The best results are achieved with regular and good communication with your caregivers.
Elisabeth Kubler-Ross, one of the world's foremost experts on death and dying, described the emotions of dealing with death as a progression of denial, anger, bargaining, depression, and acceptance. Her work deserves mention as it has inspired what we understand now more thoroughly as the journey we all travel in coping with illness and death.
There is a television commercial that portrays a woman receiving news that she has cancer. She is sitting across the desk from her specialist or GP, and as soon as the word ‘cancer’ is spoken, the sound track becomes muffled and the images blur. Everything that is said or happens in the appointment after that seems to be in a sensory and mental fog.
Your first emotional response in dealing with a life-threatening disease may have occurred when a symptom appeared – a lump, bleeding, pain, or even tiredness. You might have kept it to yourself, hoping it would go away, or just making sure you weren’t imagining things. You might have been afraid, or decided not to talk about it. If the symptom is never spoken about, then it can’t be real, can it?
Some people try to deny what is happening even once a diagnosis is confirmed. A world can change in an instant, and one needs time to sort that out, therefore the ‘fog’ in the TV scenario.
In the hope that eventually, everything will be okay, sometimes we; ask for a second medical opinion, wonder whether tests are mixed up with someone else’s, or minimize the significance of serious illness in reaction to our diagnosis of serious illness. Denial is self-protective and allows you to absorb, a little bit at a time, what illness might mean to you. It also fades over time, and as long as it does not stop you from getting the medical help you need, it is adaptive and normal.
Anger or resentment is related to a sense of injustice. Some people become ill when they have no risk factors for their illness or they have lived well and responsibly, yet develop a life-threatening illness. Carefully laid plans must be abandoned, dreams fizzle. Sometimes anger is directed at the self, those close to you, people who are healthy, or at God, or a higher power.
Anger should be discussed with a health care professional, especially if you are so angry that you can’t communicate your health care needs or symptoms. Often you can specify an underlying cause of your anger: loss of control, fear of being seen to be weak, loss of work, opportunity or family life. The financial strain that illness can place upon families, especially if you do not have employment insurance benefits, can certainly be a cause of anger and anxiety. Acknowledging and discussing these underlying causes of anger is critical to solving those problems which can be solved and moving past those that can’t.
Dying people have enough to worry about without being anxious about things they should not be anxious about. Lack of information and control are prime causes of anxiety and they are also unnecessary. Knowledge of what to expect related to your disease as well as the treatment and care gives you power and choice…and lessens anxiety. Your doctor and professional caregivers have the answers – ask the questions!
Control, even in the form of having a say on smaller issues, such as when visitors should be allowed, relives the anxiety of powerlessness. You can decide all the important issues; the important thing is to anticipate them and be ready to make decisions.
Sometimes patients fear that health care providers or loved ones will abandon them; that people will stop coming to see you when they see changes in your body, such as loss of weight or loss of strength that may occur as disease progresses, or that health care providers will decide to stop treatments that relieve your suffering.
Palliative care professionals have chosen their field because they are committed to help terminal patients live the very best life they can. They have a wealth of experience in managing pain and in preserving the dignity of the patient. They will never abandon you. “You are what they signed up for.”
Friends and family will share the same state of shock that you had, and at times will, struggle to react “appropriately”. Elsewhere on this site [link], we portray what friends and family can expect to experience and how they can best cope. In site of “inexperience”, we find people do not abandon their loved ones. In fact, the larger problem is making sure you both get needed respite and breaks from each other from time to time.
Many kinds of palliative treatment can bring about hope, even if not a cure. It is possible to improve quality of life. Often, increased hope is related to finding an increased sense of meaning or purpose in life. Staying connected to things that provide a sense of meaning can be a powerful way of maintaining hope throughout the course of illness.
Life always has purpose, and even if you’re very ill, you still have value.
With good palliative care, one can choose how to die. The following excerpt from the experience of the husband of a palliative care patient is an example of how one patient and her husband lived to the fullest, right to the end.
[link to appropriate segment in Bill Field video]
When you have accepted that you are not in control of your disease, you can focus on the positive things that provide meaning each day visiting family and friends, reviewing photographs or retelling stories, giving or taking part in projects that have meaning to you, such as writing family histories or a journal.
The challenge is to locate a part of yourself that feels untouched by illness: your character, your personality as an example. If, in spite of illness, you feel that the essence of who you are remains intact and untouchable, you will be comforted and you will understand that life still has meaning. A mother who until almost the very moment of her death is still able to preside over her family with a wag of the finger from her bed has kept her sense of self, even in dying.
As death approaches, many people find purpose in their lives by reaffirming their values in an open manner. Not everyone wants to talk as death nears, and some people withdraw. Silence does not have to be perceived as negative; it can be calm or even tranquil. Some people, through their dying, seem to, or seem to want to teach people who are close to them about how to face the end of life. The attitudes that we have about dying are largely shaped by our own witnessed death experiences and in recognizing this, help shape others’ attitudes toward coming to the end of life. Some patients find dignity at the end of life through the knowledge that they are helping others.
Death confronts us with an ultimate loss and the fundamental unknowable. Great religions have examined these issues for thousands of years. Death is universal but every one is unique. There are no rules, no easy protocols. You must develop your own and in doing so, you will teach those around you and help them prepare for their turn.
From our own experience, we can say that clergy of all great religions are used to dealing with death and are almost invariably willing to help you through it should you wish it. As well, the connection death can create between all those involved has an intensely spiritual element.
Simplicity and honesty is best. Call together who you think are important to know, all together or in stages depending on your comfort level. The silences are at first awkward, but then fill themselves. Everyone has a way of putting their own mark on what they say. Saying something like, “You know I have not been well with….. I have been working with my doctor on sorting this out. My treatment will be palliative now with everything else I am doing, pain relief and other symptoms, but no new treatments to cure my illness. I want to focus on treating….. I will need to sort out my personal affairs, make all kinds of arrangements, you know, wills, directives, but mostly I want to spend time……!” Consider taking a family member or friend to your doctor or other health professional to help share this task and confirm what you say to your family and friends.
Who could think of a more difficult task than talking to your child about the fact you may soon die? This presents a complex situation as you are coping with your own illness and reaction to it. You may feel you want to protect your child from this knowledge and the challenges that would follow, but please consider the following;
Children are smart, intuitive, and they can sense something is wrong within the family. They will cope better, as difficult as it may be, if they know what is happening.
If they know when and what you know along with you, they will feel less alone. In general there is an opportunity to have a profound experience of being able trust adults at a life-changing time, and they will become more trusting of their own feelings as theirs are validated alongside of yours.
In addition to the suggestions below, remember you can also seek out assistance and support from your health care team members who have skills in this area.
Try to find out what your child already knows about your condition. Then correct what might be misinformation or misunderstanding.
Tell your child about the illness as soon as you can, rather than having them hear about it from someone else, or through an overheard conversations. When children are not told, they feel excluded, and they may make something up in order to make sense of the changes they feel. Telling them allows them to ask questions. How others are behaving will make more sense to them. They will feel included, trusting and trusted.
Take cues from your child and give as much information as they seem to be able to take in. Talk in a language they can understand. Typically they will ask questions about things they are wondering about. You might start off by telling your child the name of the disease, and the area of the body that is affected. Give them a chance to respond. You may not need to tell them much more than this.
Encourage your child to come back to you if they are confused about anything, or have more questions once they think about things, or if they hear something different from other people. Expect that they will return with more questions after the information you give sinks in.
Tell your child what your plan of care will be. Keep language simple and focused on what the child may observe as a result. Children need to know what to expect and where to expect it, what kinds of treatment, medication and even side effects are expected. For example; after a treatment, I won’t be able to get out of bed by myself for a few days, or, the medication might make me sleepy.
Tell your child who will be looking after them, where they will be cared for, and what will change in their day-to-day routines. Review this essential information with them on a regular basis, especially if your condition is changing.
Reassure your child that you will talk to them regularly about what is happening and how you are doing. Encourage your child to ask questions of you or any other trusted person at any time.
Your health care team will be naturally aware and inclusive of children involved in
your situation. Take advantage of their knowledge and expertise.
Make an appointment with your Family Physician if you have been diagnosed as Palliative by a specialist, as it is likely your Family Physician will be coordinating your palliative care.
In order to communicate best with your doctor around this issue, remember to tell the medical office assistant that the appointment concerns your palliative care, and book a longer appointment.
You deserve time and care over these issues and the doctor needs to know this is the objective of your appointment. It may be worth taking a family member or friend with you. This time can be difficult for your doctor as well, especially if they have known you for a long time.
If you live on Vancouver's North Shore, your physician will explain how the North Shore Palliative Care Program operates, and make your referral. When your doctor refers you to the program, make sure you also have a referral to the provincial Palliative Benefits Program so that your medications and if necessary, some equipment costs, are covered.
Performing this critical step gives you access to a highly skilled team which, along with your Family Doctor, will be 100% focused on ensuring you are kept as comfortable as possible. It relieves you and those around you from having to think about the care you need.
Should you wish, you can also ask your physician to refer you to a family physician who specializes in palliative care. One of these physicians, Dr. Anis Lakha, can be seen on the video at this link.
If you do not live on the North Shore, but are in the Vancouver Coastal Health area, contact your local health unit. In addition you can contact either the British Columbia Hospice/Palliative Care Association (BCHPCA) or the Canadian Hospice/Palliative Care Association (CHPCA), you will find your nearest palliative care assistance.
Should you, your friend, or a family member become part of the Palliative Care Program, your physician would continue to direct your care - supported by an interdisciplinary team of caregivers who supplement the care given by family and friends.
The immediate palliative care team is comprised of your family physician or a family physician specializing in palliative care, hospital and community palliative care doctors and nurses and a social worker.
The larger team includes a medical director, a clinical resource nurse, a pharmacist, a dietitian, a physiotherapist, an occupational therapist, a music therapist, a chaplain, a volunteer coordinator, volunteers and a bereavement coordinator.
Palliative Care is delivered wherever you are; in the hospital on a ward or in the Palliative Care Unit, in your home, in a long-term care facility or the hospice currently being built on the North Shore. The care focuses on patient comfort, including pain and symptom control, family support and quality of life. Any of the team may be involved in your care depending on your needs.
As your illness progresses, care will be provided more intensively regardless of location. Home care nurses and social workers in particular will increase the frequency of their visits to ensure you are comfortable and that your care giving family and friends are given the breaks and support they need. [link to the NS pc program site].
Included in the BC palliative care program, free of charge, is a standardized home medication kit used province wide. When you are within a few weeks of dying, your doctor may order one to assist your family and nurse with medications should there be changes required at the weekend or overnight. It can save you and your family time, energy and worry. It does not replace your regular medications. The nurse will be in charge of managing its contents. If changes are required, they can be sorted out during regular hours between your doctor and home care nurse.
If you wish to stay at home, equipment such as a wheel chair, temporary railings, hospital bed or commode may be required. The home care nurses will make this assessment and ensure it is provided when needed.
Where you die depends on your wishes but also on your illness.
For many reasons, patients are comfortable in their own home with family and friends at hand in a familiar environment. The North Shore Palliative Care Program and provincial Palliative Care Benefits Program will support your home care; that is a nurse, doctor, medication and equipment to be available at home. This can continue until death occurs.
When you need stabilizing treatment or your caregiver or you require a break from the home (respite care), your palliative care team will arrange for you to be admitted temporarily to a hospital or hospice for a few days after which, depending on your circumstances, you may return home.
There are many medical and social circumstances where it is not always possible to die at home. You may live alone. If you have caregivers at home, the burden on them may be too great. Your medical situation may simply be too complex. Your team will help facilitate admission to hospice or hospital if you find yourself in any of these situations.
The term 'hospice' has been around since medieval times. A hospice was once a place where weary travelers sought refuge, comfort and sustenance.
The modern concept of hospice was pioneered by Dame Cecily Saunders who opened a hospice in England in 1967. In North America, hospice care programs have generally been developed in hospitals and have been called palliative care programs. The expressions hospice care, palliative care and end of life care are now synonymous.
A team of health care professionals, specially trained volunteers, friends and family members provides hospice, palliative, or end of life care. It includes medical, physical, emotional, and spiritual support until death, and support for the bereaved after the death. This care is focused on patient comfort and quality of life and is offered in North Shore homes, our hospital, hospice and care facilities.
Hospice is both a kind of care, and a physical place. Today, as a current building project on the North Shore, projected to open in 2010, the hospice will provide compassionate care in a home-like setting to people whose illness has progressed beyond the scope of traditional medical treatment aimed at curing disease or prolonging life. This end of life care is available to all in their last months and weeks of life, focusing on patient comfort, family dialogue and support, and saying goodbye. Admission to the hospice will be facilitated through your family doctor and/or your palliative care team.
The video at this link provides a caregiver’s perspective on the value of a hospice in providing quality palliative care. [link to April Telek’s video]
There are several legal issues with which you should deal now to avoid creating stress later.
Dealing with them in advance ensures they will be dealt with in a calm, organized way rather than in an atmosphere of stress and distraction.
Your doctor will talk to you about this aspect of your care in spite of how daunting it sounds. After you determine that you are palliative, and your illness is progressing, it entails signing a form that will alert paramedics not to perform aggressive chest compressions and mechanical ventilation (a breathing machine) in the case of an emergency. The form is insurance that if 911 is called, paramedics and emergency staff will help you and relieve suffering, but not try to revive you.
If you die naturally at home sooner than expected, and
by law the paramedics will aggressively resuscitate you and take you to emergency. This means aggressive chest compressions and intubation, which means, in a frail and ill person, ribs can be broken and the chest is severely compromised. Surviving it is most unlikely if your illness is at such a stage that you are in the Palliative Program.
Signing a No CPR order avoids invasive and traumatic resuscitation efforts that typically do not succeed, and potentially denies the patient and family a peaceful and graceful death at home. This order is typically left on the fridge so that medical staff has a common place to look for it if they are called. If your condition deteriorates suddenly, or if going to hospital is required, call your doctor or community nurse immediately, but not 911. Patients and families that survive an unwanted resuscitation will attest to the extreme distress it caused, and wished they had planned differently.
This is a big step for you to contemplate, and you may not feel ready to do this right away, but it will be a decision you will need to make at some point. You may wish to think about it, and talk to your family about the possibility of such a situation. It is one of those discussions where most members including the patient, in spite of the difficulty in having the discussion, feel a great relief in having done so. That said, if you reconsider your decision, it is within your rights to cancel the order. Simply speak to your doctor about it.
The doctor, only at your request, signs this form if you wish to remain alone with your family, and you do not wish to have the doctor or nurse visit at your time of death. The form goes to the funeral home, and gives them permission to take your body after death following one hour of observation by your family.
Health care directives are documents that outline treatment decisions that patients would want to be made on their behalf if they became unable to communicate or make decisions for themselves. Most Canadian provinces and territories have legislation recognizing a person’s right to make decisions regarding their own care and treatment:
Many health care directives also name one or more persons as having authority to make decisions on the patient’s behalf. These decision makers are called proxies. Some people choose to name proxies in recognition that all possible influences cannot be anticipated at the time of writing the health care directive. An example of this might be an unexpected acute illness on top of the terminal condition, or the side effect of a medication, either one affecting the decision-making ability in the patient.
Health care directives can be very specific, naming different treatments and stating the person’s preferences. Or, they can be general, making a broad statement about the person’s values regarding health care treatment. For example:
Ideally, a health care directive is made with consideration of the potential decisions that might lie ahead for the specific individual. For example, someone who is on dialysis would preferably have a directive that guides when the dialysis should be discontinued. Alternatively, someone who has an illness that may eventually result in the need to be on a machine to assist breathing should make a directive that guides this decision.
If you are unsure about what should be contained in your health care directive, sit down with your health care team to discuss what might happen as your illness progresses and what kinds of tests or treatments might be offered. Health care directives do not need to cover every medical possibility, but if you have specific concerns about receiving certain tests or treatments, these should be written down. Patients should know that even if they decide against certain lifesustaining treatments – a blood transfusion, for example – they will still be provided with appropriate medical care within the guidelines set out in their directive and will not be abandoned by the health care team.
Health care directives can be as simple as a handwritten note, but they should be signed, dated and witnessed. Some provincial governments in Canada provide sample forms on their websites and generic forms can be found on the Internet or provided by a lawyer.
Anyone who has what is called “decision-making capacity” can make up a health care directive. If someone is very confused and does not understand the issues being considered or the consequences of choices being made, then they would not have the “capacity” to make a health care directive. Provincial and territorial regulations may require that the writer be of a certain age (often 16) and able to understand the contents of the directive. Health care directives should be reviewed and updated, with the most recent one easily available to family members and the health care team. A copy of the directive can also be placed within the patient’s hospital chart.
Proxies need to understand the patient’s wishes and be ready to act on them, even if those wishes are different from their own personal views or beliefs. Proxies should recognize that putting forward the patient’s position may put them in conflict with members of the family or the health care team. A proxy’s responsibilities stop at decisions related to health care. The proxy has no responsibilities related to the person’s estate, for example.
A health care directive becomes effective when the patient loses the ability to communicate or make health care decisions. Patients may be unconscious, have lost the mental capacity to make decisions, or be unable to communicate through words, writing or gestures.
Health care professionals still have ethical and legal factors to consider in developing a plan for care. For example, the health care team is not legally obligated to begin interventions that they believe to be futile or inappropriate for the patient.
Often times, family members come to a consensus about treatment after sitting down with the medical team to discuss options. If no family member is available to make a decision about care, the health care team will try to act in the best interests of the patient.
If family members cannot come to agreement, many provinces have developed lists identifying who can make decisions on someone else’s behalf, starting with the closest adult relatives. These people are called substitute decision makers. See the following:
What follows is not a substitute for seeking legal advice. It is meant to alert you to issues and terms related to wills. Consult a lawyer to determine if you need a will and how it should be prepared.
What is a will? A will is a legal, written document that sets out how you want your property and possessions to be distributed after your death. A will also names an executor who is the person who will look after your estate after your death and make sure your assets are distributed in the manner set out in your will. If you have young children, your will can name a guardian to look after them in the event that both parents die. Provincial and territorial law sets out the requirements for a valid will. A formal will has to be signed, dated, and witnessed, and the writer must be of sound mind and have reached a certain age (often 18 year old).
Why make a will? A will ensures that your wishes will be carried out with a minimum of expense and delay after your death. Without a will, provincial or territorial legislation will determine how your assets are to be distributed to your family members and the process takes much longer.
Can a will be changed? Yes, a will can be changed as often as you like. However, changing a will is not as simple as stroking parts out and inserting new text. You will need to either create a new will (making clear that the old will is revoked) or add what’s called a “codicil” that sets out the change. Codicils must be signed, dated, and witnessed, as is a will.
What does an Executor do? The role of the executor is to represent your interests after your death. They will be responsible for making funeral arrangements, paying outstanding debts and carrying out the instructions you have left in your will. The executor will also be responsible for filing a final tax return after your death. Choosing who you want to represent your interests after your death is not simple. Many factors will need to be weighed, including the age and the health of the person, as well as where they live. You will also want to choose someone who can manage the concerns of others, who will be impartial, and who is financially stable.
What is probate? To probate a will is to review or test it before a court of law. Probate ensures that the will being used to distribute assets is the “true” last will and testament. Your executor will be required to submit a number of documents to the court registry in order to complete the probate process. Once probate is complete, the executor will receive a formal certificate verifying that the will has been proven and the executor has the legal authority to distribute the assets as laid out in the will. If the value of the estate is very small, the executor may not need to probate the will, as some institutions may be willing to transfer small amounts of money or assets directly to you.
Are some assets dealt with outside the will? Yes. If you own property as a joint tenant with someone else, for example, the property will be transferred automatically to the surviving partner after your death. All that is needed is for the provincial or territorial land registry office to receive the death certificate naming the deceased property owner. Then, title of the property is transferred solely into the survivor’s name. In addition, life insurance policies and Registered Retirement Savings Plans (RRSPs) allow you to name a beneficiary in the event of your death and these monies would also be transferred directly to the named beneficiary upon proof of death.
How do I prepare a will? Most people will seek some assistance when they are preparing to draw up a will. Common options include using a lawyer or getting help from a standardized will kit. If you have a large estate, you should probably consider drawing upon the expertise of a lawyer. In addition to actually drawing up a will, a lawyer can also provide advice on ways to reduce the amount of tax paid out in the process of distributing your assets. Whatever path you decide to follow, there are some basic decisions that you will need to make in order to complete your will. You will need to make a list of your assets and liabilities, determine who your beneficiaries will be (who you will leave your assets to), and choose an executor of your estate.
Documentation If you wish to prepare information that will assist survivors or the executor of your estate, the following documents could be useful to have on hand:
Useful links regarding wills in BC:
http://www.ag.gov.bc.ca/courts/civil/info/wills_estates.htm
After a death, grieving family members or friends have many demands placed on them in preparation for a funeral. What kind of funeral? Should a loved one be buried or cremated? What do you need to buy from a funeral home? Where do you arrange for a grave marker?
This can worsen an already heavy load of stress. We recommend discussing the patient’s wishes for a funeral well in advance.
Making arrangements for your own funeral can be as simple as writing down your preferences as to what kind of funeral you would like and where you want it to be held, and leaving these instructions with family members. If you have chosen a funeral home, the funeral director can file the instructions for safekeeping. Some people want to do as much pre-planning as possible, including paying for their own funerals in advance. If you are considering pre-paying a funeral home for your funeral:
Make sure you choose a licensed funeral director that has been in business for several years and has a good reputation in the community.
Ask where your money is going. How is it being protected?
Find out if there is any flexibility in the plan. What happens if you move to another province?
Find out if the agreement can be cancelled at any time. At what cost?
Keep a copy of the agreement and let other people know where the copy is stored.
Funerals are influenced by cultural and religious traditions, family preferences and costs. Most are held one to four days after death. If they are held more than four days after death, the reason is usually to accommodate people who are traveling long distances and need more time to arrive.
The traditional funeral offered by funeral homes usually includes a viewing of the body in advance of the funeral service, the funeral service, and burial, entombment or cremation. Funeral homes are almost always involved in making these arrangements, although families can make their own arrangements if they wish.
Funeral services are often held in a funeral home or a religious building, but they can be held anywhere the family chooses. After the funeral service, the remains of the deceased are usually transported by hearse to a public cemetery or mausoleum. In the case of cremation, some families may choose not to bury the ashes, but to keep them in an urn or scatter them on private property.
The traditional funeral is not the only option. Some families choose to bury or cremate the body soon after death, without holding a viewing or funeral service. These families may choose to hold a memorial service later. Memorial services can be held anywhere, in a hall or home, or by a gravesite, as the family wishes.
The funeral home is very often the family’s main resource in planning a funeral. The funeral director is usually sensitive to the many kinds of mourning rituals, taking into account different religious or cultural beliefs. In addition to caring for the deceased person’s remains, presenting options for the funeral, and offering guidance to the family, the funeral director acts as an overall coordinator, often linking with religious institutions or businesses involved with the funeral. Funeral homes often offer packages that include a variety of services, but these services can also be priced on an item-by-item basis if the packages do not meet your needs.
Even the simplest funerals can be quite expensive, with costs easily rising to thousands of dollars. Funeral costs include:
Basic fees: The funeral home generally has one fee to cover work that is common to all funerals: filling out forms, getting necessary permits, requesting death certificates, coordinating arrangements with religious institutions, cemeteries, or crematoriums; and taking care of the remains of the deceased after death. The funeral director may also remind you about the many details that need to be taken care of, such as (if necessary): bringing clothing for the deceased to the funeral home, deciding on pallbearers, choosing someone to deliver a eulogy, choosing a charity in lieu of flowers, and selecting a company to provide a monument or memorial.
Fees for specific items: Costs that are optional or vary depending on family choices include: a casket, an urn, or an outer burial container to postpone decay of the casket; embalming as well as preparing the body for viewing; use of the funeral home for visitation or viewing; use of the funeral home for a funeral service; use of equipment and staff for a graveside service and use of the limousine and hearse.
At further cost, the funeral home may also offer to deal with other businesses or agencies in preparing for the funeral service including: florists, newspapers for the obituary, musicians, e.g. an organist for the funeral service, someone to lead thefuneral service if the funeral home is not handling the service, cemetery (to choose a plot if necessary)
If you would like the funeral home to take care of these details for you, make sure you know the costs. Some funeral homes charge for the actual costs of these services, while others charge costs plus a handling fee. Costs add up quickly, so prior decision making saves time and money. If you cannot afford a funeral, you may want to ask about whether your province or territory will provide financial assistance, as some jurisdictions have provisions stating that every person has a right to a funeral at death. If the deceased person is a war veteran, you may want to be aware of the Last Post Fund. This is a non-profit corporation financially supported by Veterans Affairs Canada to ensure that war veterans are not denied a dignified funeral and burial for lack of sufficient funds.
Air Travel for Funerals Some airlines offer reduced fares for family members traveling to a funeral or to the bedside of someone who is dying. In order to receive the reduced fare, airlines will want to verify the person is seriously ill or has died. You may be asked for the name, address and phone number of the hospital or funeral home so the airline can check the information you have provided. Other times the airline may charge full fare and reimburse you part of the fare when you supply a Death Certificate.
Who to Notify about a Death Family and friends soon hear of the death of someone close to them, but other people should also be notified as soon as possible. These people include: the deceased’s employer, insurance companies if there are any claims to be made, doctors, spiritual advisers, if relevant, any organizations or clubs where the deceased person was a member, Veterans Affairs Canada or provincial social services departments if these agencies are involved in covering funeral expenses.
Obtaining a Death Certificate Governments, banks, and lawyers will require a death certificate in order to process benefits or deal with assets. If you are dealing with a funeral home, they will generally order as many death certificates as you request. The cost of these certificates varies across the country. In order to obtain a death certificate, you will need the following information about the deceased person:
You will also need to state your relationship to the person named on the certificate. The certificate does not state the cause of death.
The Canada Pension Plan (CPP) is a national public insurance program that provides income protection to Canadian workers upon retirement. The CPP also has a disability component that provides benefits to contributors who cannot work because of a disability. Working Canadians are covered under the disability plan regardless of their medical history. In order to be eligible for the disability benefit, workers must have paid into the CPP for a specified time period and have a disability that is both severe and prolonged. “Severe” means your condition prevents you from working regularly at any job, and "prolonged" means your condition is long term or may result in your death.
If you have children and are receiving a disability benefit, your children may be eligible for the CPP children’s benefit. To find out more about the CPP disability benefit, see:
http://www.sdc.gc.ca/asp/gateway.asp?hr=en/isp/pub/cpp/disability/benefi... at Social Development Canada.
The BC Palliative Care Benefits Program is covered elsewhere on this site.
http://www.healthservices.gov.bc.ca/cpa/publications/palliative_benefits...
People who are not eligible to receive a disability benefit from the CPP may turn to social assistance, often referred to as “welfare.” The province generally requires that the applicant’s disability be long term and severe enough to prevent the person from working. In addition, the applicant must also complete a needs test to determine the person’s total income and whether they qualify for the benefit.
Employment Insurance is a federal program that offers income protection from temporary work absences, including reasons related to illness and temporary disability. If the work absence is going to be over a prolonged period of time, employment insurance will not provide benefits. People who expect to be unemployed over a longer period would receive benefits under the CPP and social assistance programs.
Like the CPP, Employment Insurance is administered by Social Development Canada.
Some employers provide group insurance packages to their employees as a workrelated benefit. These packages may cover such things as prescription drugs, medical expenses, and dental expenses. Group insurance may also provide survivors with an income in the event of the employee’s disability or death. You will need to check with your employer or the insurance company providing the group insurance to understand the details of your particular coverage, and how long the insurance will continue in the event that illness forces you to stop working.
People who work for companies that do not offer group insurance plans or who are self-employed can buy disability coverage through a private insurer, above and beyond the CPP disability benefit.
Life insurance, either provided through a group plan at work or an individual policy that you may have purchased, will often provide for what is known as a “living benefit.” Such a benefit allows for people who have been diagnosed with a terminal illness to have a portion of their anticipated benefit paid to them in the years preceding their death. Taking such benefits will reduce the amount of the insurance benefit ultimately paid to the beneficiary of the insurance and any such decision likely should be discussed with a financial advisor.
People who have costs related to health-related goods and services or additional living costs due disability may be eligible for tax credits. To find out more about tax credits that may be available to you, consult with a financial adviser.
