Asked & Answered

Many people wonder if their grieving is normal. If you’re not crying you may feel you’re not grieving as you should, and it can make you uncomfortable. Yet, grief can be surprising and unpredictable; you may well feel emotions you hadn’t expected. It’s good to remember that your relationship with the person who died was unique, so the way you grieve this person will be unique also.

If someone dies after a long terminal illness, it’s possible that those who were close have already experienced something called anticipatory grief. This is an emotional response to loss before it actually happens. There’s usually been acceptance of the death for some time. If this has happened to you, that is, you’ve felt some grief before the actual death, then it may ease your sense of loss at the time of death, and affect the way you grieve.

Some people feel numb when someone dies, and feel intense grief much later. These intense moments can be triggered by celebrations, anniversaries, surroundings, or even people who remind you of the one who died. There may be no trigger at all. It’s hard to predict whether grief will come later.

Grief can be very private and people often wonder how their feelings compare with others’. You may find that sharing your experiences of grief helps you to understand what you’re going through. You can talk with friends about the death, join a grief support group, or see a grief counselor. You may find that keeping a journal helps you work through what you’re feeling or not feeling about death, loss and grief. We all find our own way of coping with the feelings that surround death. It is important to remember that if you feel overwhelmed, there are people who can help you try to understand what you’re going through.

It may help to see a counselor to talk about your experience and the feelings that you have. Consider joining a grief support group. Many people find it helps to know they’re not the only ones grieving, to see how others are grieving and to hear how they’re managing grief. If there’s a hospice or palliative care association in your area, or if you were involved in such a program before the death you may want to reconnect with them. They may offer grief programs, or can refer you to services that meet your needs.

Each person’s illness and situation is unique, and so the person’s health care team is in the best position to provide specific information about what each person can expect. Some of the symptoms result from the type of cancer and where it’s located. Medications may also cause some side effects. As well, there are some general effects of cancer, which lead to some common symptoms as cancer progresses.

As cancer progresses it usually affects the whole body. These indicators mark the change in someone’s condition and the progression of the disease:

• energy and strength;
• eating;
• breathing;
• responsiveness;
• pain.

The rate at which these indicators change is called the momentum of change, and can give a sense of what to expect.

Energy and strength

Each of us has reserves of energy that we use every day. People with progressive illnesses use more of their energy stores to get through each day, and their illness prevents them from being able to top up their reserves, which healthy people can do. So people who are ill are constantly spending their "energy savings."

There’s no way of directly measuring the “account balance” of reserve energy. One sign of diminishing energy reserves is decreased physical capacity, particularly in the range of activities. Physical tasks become increasingly challenging, and daily activities gradually become limited. When the illness is far advanced, it’s common that someone is in bed all day.

The "energy savings account" has another very important role. These reserves are what we draw from when an unexpected complication comes up, which could include an infection, such as a cold, the flu or pneumonia. When someone doesn’t have enough energy reserves she or he can deteriorate suddenly when faced with an unexpected complication, sometimes to the point of struggling to survive. Such times are uncertain and frightening, and must be taken day by day or even hour by hour.

Eating

Most people with cancer lose a lot of weight, even if they’re eating fairly well. This is because the cancer changes the way the body processes nutrients. The body can’t use calories in the usual way, and strength and weight don’t increase with increased food. As cancers progress, people lose their appetite and many find that food isn’t appealing. If they can communicate, they almost always say they aren’t hungry. If they’re being fed through a tube, families usually notice that it may produce uncomfortable effects. Feeding someone who is ill and has no appetite may result in nausea, bloating and heartburn.

Unfortunately, there’s no good remedy for a decreased appetite. When the goal of care is comfort, it’s usually recommended that people eat what they enjoy and realize that they will still lose weight. In advanced stages of illness food is cut back if someone isn’t hungry. This can be upsetting for family and friends. A common worry is that the person is being allowed to starve to death. Yet it’s important to accept that this as an unavoidable part of the illness. If people aren’t enjoying eating, and it isn’t helping them, then forcing food is not serving any purpose and may in fact cause discomfort.

Breathing

In advanced stages of illness breathing can become irregular and produce a rattling sound. The sounds develop when someone is too weak to cough and clear the secretions that are normally produced in the respiratory system. The secretions then gradually build up in the lungs. With some cancers people may have trouble swallowing, and small amounts of what they’re trying to swallow may go into the lungs and contribute to the secretions. The rattling sound may be frightening, and you may worry that the person is drowning or choking. In fact, a build-up of secretions is generally not distressing for the person who is ill. As breathing becomes more irregular, some people also develop long pauses in their breathing known as apnea.

Responsiveness

Generally as people come closer to the end of life they spend most of the time sleeping. This is a sign that the body systems are gradually shutting down. People often become quiet. Some people don’t have the energy to talk, and others become reflective as death approaches. Eventually people may become unconscious, or confused and restless. These are signs of changing brain function. Hearing is thought to be the last sense to fade, so it’s important to continue to talk to the person who is dying, even if he or she doesn’t respond.

Pain

Many people with cancer experience some pain. It tends to occur in the areas where the cancer is located. The sensation can vary, depending on what’s causing the pain. For example, pain caused by pressure on a nerve is different from the pain produced by general swelling in an area. There are a number of medications and techniques to treat pain. The health care team will plan treatment depending on the type of pain the person is experiencing. Medications can be adjusted so that the pain will not generally interfere with activities, and is kept under control throughout the day or night.

Momentum of change

Because each person’s situation is different it’s hard to predict how long someone will live as cancer progresses. The most useful guideline is referred to as the momentum of change: if someone’s condition changes significantly from month to month, it’s a strong indication that the person has months left to live. If such changes happen from one week to another, it often means there are only weeks of life left. If there are changes from one day to another or from hour to hour, then there are usually days or hours left.

Those who spend a lot of time with someone in advanced stages of illness usually have a good sense of when things are changing, even when the changes are subtle. These are usually accurate instincts. The momentum of change is a general guideline only. Sometimes a complication or health crisis develops, which may bring a rapid decline. Whether changes are happening slowly or quickly, it’s important for patients and families to recognize this and prepare for the unexpected. It’s helpful to discuss this and address goals or tasks that must be accomplished while the patient is still able to do so.

If reversible issues may be causing or contributing to nausea, these will need to be addressed if possible and appropriate. These may include the following:

• medication side effects (consider switching from hydromorphone to a fentanyl patch);
• severe constipation (consider an abdominal X-ray if one has not been done);
• metabolic abnormalities such as hypercalcemia or renal failure;
• infections; and
• brain lesions.
  

If there is a significant intestinal obstructive component, it will be important to distinguish between nausea and vomiting/regurgitation. It is not unusual in proximal obstruction to have repeated vomiting without nausea (except perhaps immediately before the emesis). With a purely obstructive etiology, anti-nausea medications may have little effect on vomiting, as the problem is more mechanical than related to activation of nausea receptors.

It may be helpful to consider trying to reduce a significant obstructive component. You may also consider dexamethasone to reduce the inflammatory bulk of an obstructing tumour, radiation therapy, or stenting an obstruction. There may be a role for a venting gastrostomy tube.

Environmental measures may help, such as minimizing cooking odours and having people avoid using scented body products.

In considering an approach to persistent nausea, it is important to try to block the potential receptors involved. The specific receptor types implicated in the pathways for nausea and vomiting, and potential pharmacotherapies, include:

• dopamine (e.g., with medications such as metoclopramide, domperidone, haloperidol, prochlorperazine, methotrimeprazine, olanzapine);
• histamine (e.g., with dimenhydrinate – Gravol);
• muscarinic (e.g., with scopolamine patch – Transderm-V);
• serotonin (e.g., with granisetron or ondansetron); and
• cannabinoid (e.g., with nabilone or dronabinol).
  

You may need to sequentially add a medication targeting different receptors, maximizing the dose with regularly scheduled administration, without taking away existing anti-nauseants until the nausea is under control, at which time a trial of tapering one or more of the medications is reasonable. A common error in trying to manage difficult nausea is that when a new medication is added, the current one (which has not proved effective for that person) is discontinued. You may need to combine medications at maximal doses targeting different receptors. It generally doesn't make sense to use several medications blocking the same receptor, although it may be reasonable to add a dopamine-blocking prokinetic, such as metoclopramide or domperidone, even when another dopamine antagonist, such as haloperidol or methotrimeprazine, is being used.

Methotrimeprazine blocks several receptors involved in the nausea/vomiting pathway (dopamine, histamine, muscarinic and certain serotonin subtypes). While it can be a very effective anti-nauseant, even in low doses, it may cause sedation. Also, with its broad coverage of multiple potential receptors, there will be less ability to selectively fine-tune receptor blockade.

Cannabinoids are likely underutilized in managing refractory nausea, probably due to concerns about possible side effects of drowsiness and delirium. Cannabinoids are available in tablet form, under the brand names Cesamet (nabilone) and Marinol (dronabinol). There is evidence of the effectiveness of cannabinoids in the management of nausea.

Acupuncture is worth considering as well, as there is evidence supporting its effect in controlling nausea and vomiting.

References

Ezzo J, Richardson MA, Vickers A, et al. Acupuncture‐point stimulation for chemotherapy‐induced nausea or vomiting. The Cochrane Library, April 2006.

Fraser Health Hospice Palliative Care Program. Symptom guidelines: nausea and vomiting. 2006.

Glare P, Miller J, Nikolova T, Tickoo R. Treating nausea and vomiting in palliative
care: a review. Clin Interv Aging. 2011;6:243-259.

Wood GJ, Shega JW, Lynch B, Von Roenn, JH. Management of intractable nausea and vomiting in patients at the end of life. JAMA. 2007;298(10):1196-1207.

When someone in the family is diagnosed with a terminal illness, it’s important to do things sooner than later, rather than wait for the right time. The timing of a visit depends on how much visitors will want to talk and interact with your mother. Some people want to visit when the dying person has enough energy to talk and interact. Others want to visit when someone is closer to the end of life. This is a choice that requires you to focus on what’s best for you, your mother and the rest of your family.

There are specific indicators that suggest when a person's health is deteriorating. The first is general physical condition. A person who is dying will progress from doing regular activities, to tiring quickly with exertion, to sitting or staying in bed most of the time, and eventually not getting out of bed at all. This deterioration can be gradual or quick.

A second indicator is how a person is eating. A loss of appetite and dramatic weight loss are signs that death is approaching. When someone is no longer eating or drinking there are usually a few days of life left, although it can be as much as two weeks if the person has reserves of strength.

Much closer to death, a person’s breathing changes, becoming more irregular and sometimes noisier. Mental state may also change and the person can become confused, restless, withdrawn and unconscious.

It’s helpful to watch for what’s called the momentum of change. If a patient’s condition changes from one week to another, there are likely weeks of life left. If there are changes from one day to another, there are likely days left. When changes happen from hour to hour, then death usually is hours away. This is a general guideline; sometimes a crisis develops and someone dies sooner than expected. Families need to prepare for this possibility.

Perhaps the best resource for training people preparing for ministry is Developing Spiritual Care Capacity for Hospice Palliative Care: A Canadian Curricular Resource. This educational manual is designed to develop spiritual care capacity in those responding to end-of-life situations and needs. It is oriented particularly toward students, religious and spiritual leaders, and health care chaplains who are preparing for or are engaged in providing spiritual care at the end of life. Each session includes theoretical materials and practice exercises.

You will find many other resources that could be helpful in preparing students for end-of-life ministry in the Spirituality section of this website. Some of these include:

• Cultural & Spiritual Sensitivity: A Learning Module for Health Care Professionals
• FICA Spiritual History Tool
• A Spiritual History Tool: FACT
• Taking a Spiritual History, 2nd ed.
• A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying
  

Our clinical team has written a number of articles you may also find relevant. You will find these in Spiritual Health and Emotional Health.

Several things affect how long someone can live with a blocked large intestine (also called a bowel obstruction).

Surgery may be considered if it has the potential to solve the problem by removing or reducing the obstruction. Surgery is an option if the blockage is caused by a tumor pressing on the bowel, or if there’s scar tissue or twisting of the bowel that prevents movement of stool. Surgery is only considered if someone can tolerate the surgical procedure and recovery that is required.

The patient, the family or the health care team may decide that surgery is not an option. Then, non-surgical treatments are used to try to decrease the degree of blockage, to stimulate the bowel, and to manage symptoms. These treatments may include the following:

• A medication called dexamethasone (Decadron®) may decrease the swelling around a tumor and improve bowel function;
• Other medications may stimulate the bowel to move;
• A medication, called octreotide (Sandostatin®) may decrease the amount of fluids normally produced by the digestive tract. It’s usually used when a patient is no longer taking any food or fluids orally. With less fluid, there may be less nausea and abdominal discomfort;
• A nasogastric tube also known as an NG tube (tube inserted through the nose into the stomach) may reduce pressure and ease symptoms.

The length of time someone can live with an obstruction depends on several factors:

• Overall strength and condition
  People who are active and have a fair amount of reserve strength and energy do better than people who are very weak.
   
• Degree of blockage
  A full blockage is a bigger problem than a partial blockage. With a partial blockage, people usually can sip fluids or take ice chips, which lengthens survival time.
   
• Effect of treatments
  If treatments can decrease the blockage or reduce pressure, then the person may be able to sip fluids or take ice chips, which lengthens survival time.
   
• Complications
  Complications may reduce survival time. There may be infections such as pneumonia, or intestinal bleeding. The obstructed bowel may not be getting enough oxygen, or the bowel may become perforated, that is, a hole may develop in the intestinal wall. These complications are unpredictable, and may bring death within a few hours.

Without any fluids (either as sips, ice chips or intravenously) people with a complete bowel obstruction most often survive a week or two. Sometimes it’s only a few days, sometimes as long as three weeks. With fluids, survival time may be extended by a few weeks or even a month or two. With a bowel obstruction, things may go better than expected, but it’s important to prepare for sudden, unexpected changes.

Attending to the spiritual struggles and needs of patients and families is part of palliative care philosophy and practice. Clearly, you have spirituality on your radar as you care for patients and have integrated it into your practice. Your comfort in opening up conversations with patients about their spiritual perspectives and religious beliefs enlarges and deepens the care you and the health care team provide. Your prayers with patients can be a meaningful way of supporting their religious faith and affirming a divine presence in their suffering.

Because spirituality is part of palliative care practice, cross-cultural issues and the need for spiritual sensitivity do arise. Health care providers may feel uncertain when trying to respond to the spiritual needs of patients from traditions other than their own. It is tempting in such situations to avoid the spiritual domain of care or to leave it to the patient or family to make their needs or expectations known. However, a better option is to approach these patients with a readiness to learn how the health care team can support them in meeting their spiritual needs during their illness.

A conversation about patients’ spiritual needs or expectations may reveal how you or other team members can act as spiritual resources for them. If necessary, you can clarify with the patient or family what your role might be in supporting him or her. It may be helpful to acknowledge that your faith background is different and to ask the patient how he or she would like to be prayed for. Many religious patients or families feel comfortable and supported if familiar prayers, rituals and symbols are offered to them by representatives of their own tradition. You or the team’s spiritual care provider may play a key role in arranging this.

Some patients have inclusive spirits and inquisitive minds that cut across religious boundaries. These patients may welcome opportunities to talk about spiritual issues with a health care worker from a different spiritual tradition. They experience this exchange of perspective and shared exploration of spiritual questions as an enrichment of their spirituality. They are open to including people from other traditions in their personal spiritual community. If respect and trust grow in these relationships, praying together may arise naturally.

Even when mutual trust and respect have been established, a health care worker needs to carefully explore how prayer could be shared meaningfully when the possibility arises. There is no one right way to share prayer across faith boundaries. The important thing is to find a way that works for both the patient or family and the health care worker. You may find some of the following suggestions helpful:

• Offer a prayer that is familiar to you and invite the patient or family to do the same.
• Be a respectful presence and witness as the patient or family prays.
• Invite the patient or family to begin the prayer, then close the prayer yourself. That way you will be able to get a feel for the “prayer language” of the patient and to tailor your closing as appropriate.
• Pray in a generic way that uses language not specific to any tradition. For example, “Holy One,” “Creator,” or “Living Spirit” may be addressed rather than “God” or “Jesus” or “Allah.” Prayers could simply end with “Amen” or “Peace,” or “May you be blest,” rather than with “In the name of the Father, Son, and Holy Spirit.” (Do not use words that are part of the patient’s tradition but not part of yours to avoid being seen as insincere or presumptuous.)
• Use a blessing that is not strongly attached to any particular religious tradition. This may be as simple as “God be with you” or “God bless you.” However, depending on the situation and relationship, longer blessings may be appropriate. Here are two examples:
  • The loving-kindness meditation, which has been adapted from the Buddhist tradition and is used widely. There are various forms of this blessing, but for health care crises, the following may be particularly helpful:
    May you be at peace. May your heart remain open.
    May you awaken to the light of your own true nature.
    May you be healed. May you be a source of healing for all beings.
  • The old Gaelic blessing:
    Deep peace of the running wave to you.
    Deep peace of the flowing air to you.
    Deep peace of the quiet earth to you.
    Deep peace of the shining stars to you.
    Deep peace of the infinite peace to you.
• Offer to arrange for a spiritual leader from the patient’s tradition to pray with him or her. You might explore whether the patient or family would like you to be present when the spiritual leader offers prayers.
• Read a prayer from the patient’s tradition. This could be especially appropriate if the patient has cognitive or communication impairment.

In no case should prayer be imposed on the patient or family, or offered without their consent. In the same vein, health care professionals should not engage in prayer if they feel uncomfortable, insincere or conflicted. Your prayer support of patients and families does not need to involve actually praying together. You can simply let them know that you are remembering them in prayer.

Your presence and support is the greatest gift you can give your wife. This time can offer you both a chance to talk about things that matter to you.

You may want to talk about memorable moments in your lives, share stories about people, or review important events. Let your wife know the positive effect she’s had on you. Encourage family and friends to send letters or cards to her.

Your wife may want to have more serious discussions. Many people value this chance to share feelings and ideas they never thought they’d be able to discuss. Some people want to leave special letters or mementos for others, and your wife may need help with this. Some people find it helpful to record stories in some form.

If your wife wants to plan her funeral or memorial service, you can help her with this. She may want to choose the location for the service, the music, any speakers and what she wants to have happen.

There may be other ways that you and others can show your wife she won’t be forgotten. You may want to consider these ideas, or encourage others to do so:

• Make a photo album dedicated to pictures of your wife;
• Put together a memory box of objects important to her;
• Start a scrapbook dedicated to memories of her;
• Write down your memories of your wife. Ask others to add their own memories;
• Ask people to help plant a tree or place a bench in your wife’s favorite park;
• Ask people to give to an organization or project such as a scholarship, in your wife’s name.

Sometimes your support may be just being with her in silence. It’s okay to ask her what you can do to make this time the best that it can be.

Suggested Reading

What Dying People Want: Practical Wisdom For The End of Life
by David Kuhl, M.D.

Information is limited regarding the long-term use of polyethylene glycol (PEG). Some of the information available suggests that it is the most effective for the first 14 days of treatment. However, geriatric resources produced by the American Society of Consultant Pharmacists suggest continuing the use of PEG if it still meets your therapeutic goal. There is very little literature in the area of long-term use of PEG.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary, 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

Living with a loved one who has a progressive cancer disease is stressful and exhausting. It affects each family member differently, and everyone has his or her own reaction. Often, the way we respond to one another becomes more intense as the stress of the situation increases. Your daughter’s behaviour, which may appear defensive and self-focused, likely reflects her own vulnerability and fear of losing her mother.

We understand your frustration completely. No doubt if your daughter could find a way to deal with her issues, she wouldn’t be increasing the emotional tension at home. However, she may be reacting in the only way she knows how, and is not able to separate out her own “stuff.” In this challenging time, consider meeting as a family to discuss everyone's needs. Creating understanding among family members can help you work toward common goals.

Our guess is that you all care a lot about each other and no one wants the increased tension. That's an important starting point. Recognizing that the demands of the situation drain energy and strain emotions is important too. Be upfront about what you need. Try to balance understanding what is happening for each person with what each of you need. It often helps to remember that “no one signed up for this," and that the situation itself is causing a lot of your reactions.

We expect that all of you want your wife to use her limited energy in the best way possible. Acknowledge the realities of your situation and allow people to speak openly without judgment. This will help you better understand each other. It will also help you come up with practical strategies to deal with the demands of a challenging life experience.

Some people find it helpful to share with others who are travelling a similar road. You may like to take part in our Discussion Forums. In this way, you can share your experiences, questions and concerns with other caregivers who are dealing with similar stresses. Having someone to talk to on a regular basis can help you sort out your thoughts and feelings. It may also you give ideas about how to cope.

Also consider help from health care providers and volunteers from resources available in your community. There may be a palliative care program, hospice palliative care association or grief support group in your area. Such organizations can usually point you to useful resources and helpful programs for patients and families, before and after the death of a loved one. You can also look for resources in our cross-Canada directory: Programs and Services.

Resuscitation can mean different things. Here it’s taken to mean cardiopulmonary resuscitation (CPR). This is defined as the attempt to restore a heartbeat in someone whose heart has stopped beating and the attempt to restore breathing in someone who has stopped breathing.

Decisions about resuscitation take into account many factors, a major one being the underlying reason why the heart stops. This in turn determines CPR’s chances of success, and the possibility of damage from the procedure.

CPR was originally intended for situations when a stoppage is caused by a problem with the heart itself. In these cases, the rest of the body functions normally up to that point. In this scenario the chance of CPR restoring heartbeat is at most 10%. There’s risk also of brain damage if the brain has not had enough oxygen while the heart was stopped. Even when CPR works, people are on life support for some time afterward and sometimes can’t survive without it.

Over the years, the use of CPR has broadened to include a wide variety of medical situations. It’s clear now that the greater the general health problems, the less the chance that CPR will work. In terminal illness, there’s a relentless decline throughout the body. In the final days, people tend to sleep most of the time, complications are common, breathing becomes weaker and it finally stops. A few minutes later the heart stops. This is the natural process of dying from a progressive terminal condition. In such circumstances attempts to restore heart function do not work. The heart has stopped because of the burden of illness on the entire body. All body systems are shutting down and are not available to support heart function.

Some people believe that CPR offers hope. Such hope, however, is not useful if there’s no chance of restoring heart function. The resuscitation procedure is complex, costly, labour intensive (involving many health care providers), and causes physical damage to the patient. Such a demanding procedure should not be performed when there’s no chance of success. Physicians are not obliged to provide treatment that can’t possibly work, and the ethics of doing so are questionable. For example, a surgeon can’t be expected to perform surgery that has no chance of success; a physician can’t be obliged to prescribe medication whose use is not supported by evidence.

When discussing resuscitation decisions, open and honest communication is essential. Honesty is a key element in developing trust and offering care. It is not honest to offer CPR as an intervention that offers hope in the end stages of a terminal illness. Occasionally, this view may create disagreement among the patient, their family and the health care team. If conflict arises, it must be addressed. Often this involves obtaining a second opinion from another physician. If the second physician doesn’t support the first physician’s decision, then care may be transferred to the second physician.

In palliative care the family is recognized as the ‘unit of care’ and bereavement care is believed to be an integral component of the care we provide. Therefore, our responsibility in developing a comprehensive palliative care program should include offering bereavement care to the family following the death. It is generally agreed that grief is a normal reaction to loss and most people manage fairly well with no intervention at all. However, it is also recognized that general support and relatively simple interventions such as information about grief’s common experiences, are helpful to bereaved individuals.[1]

A smaller percentage of individuals may require additional follow-up and intervention for more complex grief. During the caregiving period preceding death, health care providers may plan to utilize a Bereavement Risk Assessment Tool (BRAT), such as the one developed by the Victoria Hospice Society.[2] An assessment tool such as the BRAT offers a concrete, effective way of gauging how individual family members are coping and helps to identify personal, social, emotional and spiritual factors that may place certain individuals at risk after the death of someone close and therefore, require additional follow-up and counselling.

The following considerations may guide decision-making and program development for your community of practice:

• Will a bereavement risk assessment tool be utilized during the caregiving period by the health care team involved?
• At the time of death, will you provide a basic information brochure/handout to family members? This might include a brief overview of what family members might experience in bereavement, additional resources (e.g. Canadian Virtual Hospice website), and contact numbers if the individual wishes to explore further information, support, or counselling. Will this be given to the family at the time of death or mailed inside a sympathy card at a later date?
• Are you able to screen, teach and engage hospice volunteers in providing bereavement services (to assist with mail-outs and/or follow-up phone calls)? Experience tells us that bereaved individuals often reach out or benefit from some additional support approximately 3 months following the death, when the reality of the loss sets in and yet others (family, friends, work colleagues) around them have moved on and expect them to be ‘over it’.
• If additional counselling/intervention is required, are there other resources that your program can link these individuals to (e.g. counsellors with the cancer care agency, employee assistance programs, social workers at a local hospital/clinic, local clergy or spiritual care providers, crisis counselling telephone lines)?
  

In initiating new services, it is often best to keep the plan simple and realistic, and build from there.

See also: Grief Work and Grief in Times of Celebration: The Empty Spot

References

1. Victoria Hospice Society & Cairns M, Thompson M & Wainwright W. Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care. Health Professionals Press: 2003.

2. http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/Tools+for+Practice/Grief+and+bereavement/Bereavement+Risk+Assessment+Tool+%28BRAT%29.aspx#id_1cbe94fbefb0be0c2d72f7a6ccc58ce0

Resource

Companioning the Bereaved: A Soulful Guide for Caregivers, a book by Alan D. Wolfelt, presents a model for grief counselling based on his "companioning" principles.

Teenagers are able to understand the abstract, and recognize that death is final and personal. Dealing with death can be difficult for adolescents and have an impact on all aspects of their daily lives. Their mood and overall coping can be profoundly affected. This can include alterations in their sleep pattern, how they interact with people around them and also their ability to concentrate at school. The teenage years are a time of self-exploration. Adolescents want to gain independence, but at the same time they may envy younger children who have no hesitation in seeking out physical affection and freely talking about their feelings. These experiences can bring out new emotions, which adolescents may struggle to understand and attempt to control.

It is also important to keep in mind that grief can be emotionally and physically overwhelming, and that individuals react in very different ways. Typical grief behaviors or feelings experienced by teens include:

• emotional numbing
• guilt
• anger
• inability to concentrate
• overwhelming sadness/anxiety
• depression
• being disruptive in school
• dwelling on the person that has died
• eating/sleeping disturbances
• at times appearing unaffected by the death
• increased risk taking behaviors
  

Every teenager will process a death in their own way and there is no rushing it along. By the age of 13 and older, peers have become an important part of life. Therefore, finding positive support from their friends is crucial and should be encouraged. Because of this connection with peers, support groups can be a great place for adolescents to meet others who are grieving. They realize they are not alone in their grieving and can find support in others who are experiencing similar circumstances. At the same time, teens may not want to stand out as being different from their peers, so they may avoid talking frankly with their friends about their feelings.

Dealing with death, especially a sudden or unexpected death, can be particularly difficult for adolescents. They are trying to make sense of a situation that they have not encountered before and cannot understand how something so devastating can happen to someone so close to them. These emotions can be a struggle, and often manifest in anger and a feeling of helplessness.

Helpful activities for grieving teens may include keeping a journal or having an opportunity to remember their friend who has died. This may include putting a memory book together, providing written memories to the deceased teens parents, or initiating the placement of a tree on the school grounds in memory of his friend. Being involved in something that will commemorate his friend may be an avenue to express emotions.

Although typical grief behaviors are highlighted above, there are signs that grief might be more complicated and require some intervention or assistance from professionals. These behaviors include the following:

• Persistent anger
• Destructive or negative thoughts
• Physical assaults on others
• Cruelty to animals
• Extreme or disturbing changes in behavior
• Unhealthy or extreme risk taking behavior
• Thoughts of suicide
• Frequent panic/anxiety attacks
• Persistent physical illness
• Denial that the death has occurred
• Physical complaints that persist
• Significant depression
  

If you require assistance in your practice to understand teen grief or a place to refer this patient, explore the resources available through the local hospice or palliative care program, adolescent mental health program, or children’s hospital. There are also resources available online.

Sometimes people who are in their final days or hours of life have a brief period of physical or mental improvement. It’s not clear why this happens, but these are some possible explanations:

1. A person near death may have spent a few days in an unresponsive state. This period without much activity may help the body rest, so the person may wake up and have some energy to draw on. This is a very small amount of energy, but it’s significant compared to the person’s previous state, and may seem like a remarkable improvement. The person may interact with others, and possibly eat and drink. This period can be deceptive both to health care providers and to the family. Everyone is preparing for death, and instead the person suddenly appears better. This period doesn't last long, however, and death commonly comes within a day or two.

2. When someone has cancer in the brain, they are usually unresponsive for a few days before dying. The person likely isn’t taking in any fluids during this time, which in turn may reduce the amount swelling in the brain. The reduced swelling may make the person more alert for a few days. The person deteriorates soon after, however, because the disease is still progressing.

Your current situation must seem overwhelming. So it’s natural to want to take control. In hospice, you can have a lot of control over your own health care.

Before you enter hospice, it’s a good idea to meet with your health care team. They are the doctors and nurses who will provide your care. Review how you are feeling now and what might happen as your illness progresses. Tell them how you wish to have your future care provided. For example, discuss how you want your pain controlled. Once you have talked about your wishes, write them down in a health care directive, a personal directive, or a living will. This process is called advance care planning. Talking about and writing down your wishes is very helpful in case you can’t communicate with your health care providers later.

When people explore options for an early death, they are often concerned with how things will go. Will pain become more difficult to manage as their illness progresses? Will they have control over their pain medication amount? Our experience is that there are many options available to manage your pain.

There are limits to what you can ask from your health care providers. They must follow the law and uphold the standards of their professional practice when providing your care. But it’s important to talk openly and honestly with your nurses and doctors. Ask them the difficult questions on your mind. Then they will know what worries you and can explain options for your care.

Your doctor can’t suggest how much morphine might cause your death. But he or she can discuss the issues raised by your question. So be open with your concerns about pain. Tell your doctor if you feel unsure about what lies ahead, or if you are afraid of losing control. Mention if you are feeling depressed or are in spiritual distress. This is an opportunity to explore these issues and find some peace of mind.

We encourage you to seek support to help you through this difficult time. This can include getting information and finding help with care and other tasks. Talking to someone, sharing your concerns and asking questions are all important ways to feel heard. Begin by finding out about support services in your area. Some good places to start are cancer care clinics, hospice palliative care centres and your regional Cancer Society. They have staff and volunteers who can offer a “listening ear.” These specially trained people can offer emotional and spiritual support, as well as practical assistance.

It’s normal to turn inward when we are suffering or scared. Becoming informed and doing some advance care planning can help you maintain control and reduce the desire to have death come sooner.
Some people find it helpful to share with others who are travelling a similar road. You might like to take part in our Discussion Forums.

As your question suggests, some patients believe or intuitively sense that illness has a spiritual as well as a physical dimension. For them, receiving medical care is part of a bigger picture that involves their spirituality and/or religious faith. As they face the anxiety of a life-limiting illness, patients may turn to familiar spiritual practices or resources for reassurance, hope and a sense of peace. For other patients, illness becomes an occasion for deepening their religious or spiritual perspectives in ways that go beyond their faith’s tradition. In either case, patients often experience spiritual struggles that test and temper their beliefs, values and practices. Clinicians may experience tension when providing care to a patient whose spiritual beliefs do not align or are in conflict with their own. Studies demonstrate that clinicians may avoid spiritual issues for fear of offending their patients or because they lack training and skills in this area.[1]

Although the philosophy of palliative care has always included the spiritual dimension, we are still growing in our understanding of how to respond to the religious and spiritual needs of patients. While there is no blueprint or philosophy that can adequately address all the questions that come up in practice, the report on the 2009 Consensus Conference on Spiritual Care in Palliative Care provides helpful recommendations.[2]

Your question seeks the right balance between respecting a patient’s request for your spiritual support and preserving your personal integrity. In the end, this balance is personal and the result of “trial and error” for each professional caregiver. One or more of the following suggestions may help you strike the right balance:

• Candidly acknowledge to the patient that you are not a praying person, but you recognize that prayer is important to the patient, and you are willing to remain present in a quiet way while he or she prays.
  • Variations of this approach:
    • Tell the patient that although you are not a praying person, you will make a point of thinking about him or her in the coming days. If appropriate, you may also tell the patient that you will send positive thoughts his or her way.
    • Suggest that you spend a few moments of silence together to quietly reflect on the patient’s concerns and hopes in your own way.
• State that praying with patients is not part of your practice, but that you could refer the patient to a spiritual care provider. In addition to praying with the patient, mention that a spiritual care provider could discuss any other spiritual needs that he or she may have.
• Use the request for prayer as an opportunity to discuss the patient’s thoughts and feelings about his or her illness. Ask what the patient’s prayer would be and what spiritual resources are important to him or her. This is an opportunity to explore how the palliative care team could support the patient’s spiritual needs. You might conclude the conversation by saying, “I recognize how important what we’ve been talking about is to you. With your permission I’d like to talk to other team members about what you’ve shared so we can work together to make sure that your spiritual needs are met.”
  

A professional caregiver’s spirituality, even if it is not religion-based, is an important resource in the provision of care. It provides motivation and direction for compassionate and competent care. While it may be quite different from the patient’s spirituality, it provides grounding for appreciating the importance of the patient’s spiritual needs. At times, a caregiver’s response may disappoint patients who expect the caregiver to join them in their religious practices. However, other patients will feel a deepening trust and comfort when caregivers relate to them in authentic ways and draw from the wells of their own spiritual resources.

References

1. Balboni MJ, Sullivan A, Amobi A, et. al. Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. J Clin Oncol. 2013;31(4):461-467.

2. Puchalski C, Ferrel B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885-904.

Refractory edema in advanced metastatic cancer is one of the more challenging clinical problems. Diuretic therapy tends not to be particularly effective.

Occasionally, there may be contributing factors that can be fully or partially addressed. There may be inferior or superior vena cava obstruction by clot (for which anticoagulation may be a consideration), or tumour (which might be helped with corticosteroids, radiation, chemotherapy). It is worth reviewing the medications to see if edema is a potential adverse medication effect. There are case reports of opioids causing peripheral edema, which improved with switching opioids, and gabapentin and pregabalin are known to cause edema.

Extensive intrabdominal and pelvic disease may impair venous and lymphatic return from the legs. Hypoproteinemia can result in edema due to fluid shifts into extravascular space.

General measures to reduce edema include:

• Elevation. This is not as helpful in lymphedema caused by tumour, but is often recommended nonetheless.
• Activity/exercise if possible.
• Compression garments. Involves physiotherapy or occupational therapy to assess for this possible intervention. Although not always well tolerated, these devices may be helpful.
• Manual lymph drainage through massage. Massage therapists and physiotherapists who specialize in lymphedema management may be able to help with this intervention.
  

Further care includes:

Meticulous and gentle skin care. This includes keeping the skin clean and moisturized in order to minimize the risk of skin-barrier breakdown and the risk of infections.
Assessment and care to ensure safety and mobility. For example, if lower limbs are heavy, transfers may be very difficult. If lower limbs are “weeping,” the person may be at risk of slipping on wet floors.

There are reports of using subcutaneous drainage for refractory lymphedema.[1,2] Subcutaneous drainage is assessed and considered on a case-by-case basis, and further research is required in this area.

References

1. Faily J, De Kock I, Mirhosseini M, Fainsinger R. The use of subcutaneous drainage for the management of lower extremity edema in cancer patients. J Palliat Care. 2007;23:185-187.

2. Jacobsen J, Blinderman CD. Subcutaneous lymphatic drainage (lymphcentesis) for palliation of severe refractory lymphedema in cancer patients. J Pain Symptom Manage. 2011;41(6):1094-1097.

Other references

CarePartners Palliative Care. Lower extremity lymphedema management toolkit. Author: April 2008.

Kerchner K, Fleischer A, Yosipovitch G. Lower extremity lymphedema. J Am Acad Dermatol. 2008;59(2):324-331.

The Canadian Virtual Hospice website has a wealth of information for those who provide palliative, end-of-life and bereavement care. In Topics, you will find an extensive selection of articles written by our Canadian Virtual Hospice clinical team on common palliative and end-of-life care issues. In Asked and Answered, you will find answers to questions on a range of palliative care topics. Although prepared for the general public, this information offers foundational knowledge to someone new to the specialty.

Tools for Practice provides information specifically for practitioners, such as identified protocols, advanced practices, and assessment and evaluation tools. You can also browse through Courses and Conferences for upcoming learning opportunities.

Here are some organizations and colleges that offer courses in palliative care that are open to LPNs:

• Life and Death Matters is an organization started by an experienced hospice palliative care nurse on Vancouver Island. It offers a range of educational materials and online courses.
• Grant MacEwan University in Alberta offers distance education in palliative care and gerontology for health care providers. The university offers a post-RN certificate program and a non-credit course in compassionate care for LPNs, chaplains, care aides, volunteers and others.
  

Various provincial LPN organizations are also working on competencies that include palliative care, such as Alberta’s Competency Profile.

From what you describe, your brother is showing signs of confusion. By understanding more about confusion, you can better understand what he is going through and what can be done.

Confusion occurs when the brain is not working properly. Confused people often have problems remembering, paying attention, speaking, thinking, and understanding fully what is going on around them. Confusion can seem to come and go. This may explain why your brother seems fine at times, and why sometimes he does not make sense.

People with a serious illness often become confused. Many factors can contribute to this, and it is not always possible to determine one exact cause. These are some common factors that can cause confusion:

• infection,
• medications,
• low levels of oxygen in the blood,
• pressure on the brain caused by tumor or injury,
• chemical imbalances in the blood,
• pain,
• decreased functioning of all the body organs as a person nears death.

People who are confused often say or do things that are out of character. It is common for confused people to feel threatened by others and by changes in their surroundings. They may be reluctant to trust family, friends and caregivers, and they may think others are trying to harm them. These paranoid thoughts may be considered a form of self-protection. If someone cannot sort out the world any longer, it is safest to consider everything a threat. In this state, people can say or do things that are hurtful to people they know.

Confused people also can misinterpret things. For example they may think a coat rack is a person, or that clothing on the floor is an animal; these are called illusions. At other times, people can experience hallucinations, that is, seeing, hearing, or feeling things that don’t exist at all. Someone having hallucinations can be frightened, or comforted or not distressed at all. Sometimes people see visions of relatives who have died, or who are living but not actually present. Confused people may become restless, anxious, agitated and have trouble resting.

Confusion can be distressing both to your brother and to you. Like many relatives of confused people, you may say "This isn’t my brother." You may feel hurt by some of what he says or does. Your brother’s words and actions may be so inconsistent with who he was before he became confused that you may feel you’ve lost your brother, even before he dies. It’s important to remember that what you’re seeing is the result of changes in the way his brain is working. Your brother is not in control of how he’s thinking or behaving. His confusion is a part of his disease; if he says or does things that are strange, this is not a reflection of his feelings for you.

Your brother may become more comfortable if he has familiar things around him. It may help to put some pictures of family and things he enjoys near his bed. A calendar or clock can help him keep track of time. If your brother is having hallucinations that are comforting or at least not frightening, it’s better to acknowledge that they’re comforting, rather than to try to re-orient him to reality. If your brother seems restless, frightened or threatened, it’s usually best not to contradict him. Disagreements or arguments may make him feel more threatened. It’s best to acknowledge the distress he must be feeling and to assure him you’ll work with him to try to sort things out.

It’s important to let the health care team know what you’re seeing. It may be possible to investigate the cause of the confusion, and there may be medications to reduce the anxiety or restlessness that it causes. If the health care team knows what’s causing the confusion it may be possible to treat the cause.

It can be painful to question whether your brother knows who you are and what you’re saying. There’s no way of knowing how much people hear and process when death is near. We do know, however, that hearing is usually strong, even near death. It may be very meaningful to speak to your brother whether he seems alert or not. You or other visitors may feel the need to do or say something at his bedside. Often, though, the presence of family or friends near the end is more important than what’s done or said. Families often just go on visiting, reading, laughing and joking, telling stories, or watching television, in other words, being a family. This may well be what pleases your brother most, knowing family is present and that you’re supporting each other.

Dexamethasone (Decadron®) is one of a group of medications called corticosteroids. This group of medications has a set of side effects that together are known as Cushing’s syndrome. The common side effects include weight gain, increased appetite, bloating, filling of the face (called moon face) and filling of the abdominal area. These side effects appear if dexamethasone is used for longer than a few days. Dexamethasone can also cause irritability, and if used longer it can affect muscles and bones.

Dexamethasone is used to treat a variety of problems. In each case, the benefits of treatment have to be balanced with the burdens and side effects. This is done by looking at the overall picture of what’s happening with the patient. The health care team can help you understand all the different factors that are being considered in this situation.