Asked & Answered

Misunderstandings are common when terminal illness and prognosis are discussed. Most people, including some healthcare providers, are uncomfortable with the subject. Because of this, or because they want to prevent distress, health providers may use vague terms that are open to interpretation. Two people can be using the same words, but be talking about different things.

For example, the word "prognosis" can have different meanings. It’s possible that a physician uses the word to mean one thing, such as chance of cure, while you may be thinking about something else, such as your father’s life expectancy or quality of life.

Some healthcare providers don’t like to predict life expectancy because it’s difficult to estimate and rarely accurate. At early stages of an illness, forecasts are based on published studies. As the illness progresses, such studies become less relevant. There are so many factors that come together to influence a person’s health. This is why one person’s experience can be very different from another person’s experience, even if they are both confronting similar illnesses. Even so, it’s reasonable to ask if your father’s life expectancy can be measured in days, weeks, or months.

A guide used by palliative care providers is something called the momentum of change. When someone’s condition changes from one month to the next, there may be months of life left. Changes from week to week can mean weeks left. Eventually, your father’s energy and strength will decrease until he’s spending most of his time in bed. His condition may change from day to day and then hour to hour, at which point, he likely has days then hours of life left. This is a guide only, as something may happen unexpectedly.

It helps to remain hopeful, but plan for even the worst possibility. If you or your father need to address some matters, then now is good time to do it, while your father is still able. People often wait too long to tie up financial and other affairs, or to connect with other loved ones.

Families and patients vary greatly in how much they want to know. Healthcare providers may not be sure how much detail to give, and may look to you for cues. You can help by being clear about how much information you wish to have.

Most of us struggle with the fact that life ends in death. When a family member dies or when we think about our own death, the mystery of death touches us personally. We may feel anxious about the way death cuts us off from people we love and care about. We may be frustrated or disappointed by how little solid evidence there is about what people experience after death. We may wonder what is the point of life if it ends in death.

Thoughts about what happens to us after death may bring up questions about the universe we live in. Is our universe friendly or not? Does human life have purpose and meaning? If we are religious, we may wonder whether God is loving or punishing, or what is God’s purpose for our lives.

Our answers to such questions affect how we feel about death. Some people find comfort in religious answers about the afterlife; many religions provide pictures or maps of life after death, and often describe rewards and punishments for the way people lived on earth. Other people may feel abandoned by God, or feel religions do not provide the answers or comfort they are seeking during this challenging time.

Some people believe that our mortality helps to make life meaningful – that if we lived forever we would not recognize what a gift life is, or feel an urgency to find our own way to live meaningfully. Some say that death does not destroy the meaning of our lives – that what we create in our living and dying continues to influence the world after we are gone. However, other people’s ideas about how death relates to the meaning and purpose of life will not necessarily satisfy us. Each of us must explore for ourselves questions about the meaning of our lives in light of death.

If we believe that the universe is friendly or that God cares about us, we may trust that even in death we will be cared for well, or will remain part of nature's web of life. If we believe that life has meaning, we may be able to accept death as part of life; that is, if we have tried to live with a sense of purpose, we hope that the meaning of our lives will not be wiped out by death. If we feel disconnected from the universe’s web of life, or experience God as demanding, harsh, or distant, we may have more difficulty facing death with trust, acceptance, and hope.

Perhaps you can discuss death and the meaning of life with a trusted friend. Such a conversation may be difficult to begin, but it may give you new ways of looking at things. If you have found comfort or strength in a religious tradition, you may want to talk with a religious leader from your faith community about your questions and anxiety. Another option is to talk to a professional counsellor, social worker or hospice volunteer.

Anxiety about death can rob us of our joy of living, but it does not need to be so. We must trust that if we live with an open heart and mind we will find pieces to the puzzle that help us to make sense out of life and death. This willingness to face our mortality requires courage and thoughtful reflection. Questions about what happens after death and how death relates to meaning in life will likely be lifelong. They are challenging, but also valuable. They can help you to see death as a meaningful part of life.

These articles offers ways of reflecting on meaning and purpose in the face of death:

• Spirituality and Life-Threatening Illness
• Finding a Spiritual Companion
• Finding Meaning and Purpose during a Health Crisis

These books also may provide help and guidance:

• Death: The Final Stage of Growth by Elizabeth Kübler-Ross
• Start the Conversation: The Book About Death You Were Hoping to Find by Ganga Stone, Maryann Brinley, and B. Franklin
• Life After Death: The Burden of Proof by Deepak Chopra

The terms "palliative care" and "hospice" mean different things to different people. Here, "hospice" is taken to mean a facility that provides an alternative home for people living with a terminal illness. These people need a community, home-like environment and specialized care, yet their care isn’t so complex that it requires a hospital.

Decisions about admission to a hospice depend on the care a person needs and the specific hospice setting. For example, someone may enter a hospice when care can’t be provided at home or when other options have been ruled out. The admission criterion varies among areas and among individual hospices. Palliative care providers or programs in your area may help you determine the best timing for admission to a hospice.

If hospice palliative care is a new career path for you, consider taking a volunteer education program specific to this field. These programs provide a solid foundation for palliative care, bereavement care and the interdisciplinary team approach to care. Volunteer education programs also give you work experience in the field and can help you gain a better understanding of yourself. You can find out more about volunteer education programs in For Volunteers. Here you will also find a self-assessment tool. Self-assessment, volunteer education and experience can help you decide if you are suited for a career in hospice palliative care.

Programs and Services provides the contact information for the hospice palliative care office closest to you or your provincial palliative care organization. Often, local and provincial offices offer volunteer education programs and have small lending libraries of hospice palliative care books, videos and DVDs that you can borrow to learn more about this area of work.

You can explore other educational opportunities by browsing through Courses and Conferences. Most online courses are specific to a certain profession and build on foundational learning. However, some courses are designed for broader audiences. If you have specific questions about education and training, you can send them to our Ask a Professional team.

Having your mother’s wishes outlined on paper will help both of you. If you know more about what your mother really wants, you’ll be assured that you’re following her wishes in an emergency, rather than making decisions for her. While the name and purpose varies across the country, most areas of Canada recognize health care directives, also known as advance directives. It can be written by a patient or a lawyer, as long as it follows the procedure required in each province or territory. It’s used to guide decisions if the patient can’t communicate in any other way. The document can also name a person, called a proxy, who can make decisions on the patient’s behalf.

A directive can be general or specific. It can state that someone doesn’t want to be kept alive against his or her wishes, or it can state that someone wants all possible treatments within generally accepted medical standards. It should provide for appropriate pain control, comfort care and respect for the patient’s dignity.

For your mother, it’s important that a directive states that she wants to die at home. It’s important also that it specifies how she wants to be cared for in certain circumstances. For example, it can state whether she wants cardiopulmonary resuscitation (CPR), a ventilator for breathing, or other treatments. In preparing a directive your mother may find it useful to talk with her health care team about the benefits and risks of specific treatments. If your mother names a proxy, she must ensure that the proxy knows her values intimately and understand her wishes. The proxy may become her spokesperson, interpreter and advocate.

In most areas, a directive has no legal effect if your mother can still make her own decisions. Health care providers can’t ignore what she says in favour of written instructions. They need her consent for treatment if she’s capable of giving it. If she can’t, then health care providers are legally obliged to follow instructions in a health care directive if one exists. Therefore, it’s a good idea that key people have copies of the directive. This may include family members, health care team members, and especially the proxy who may need to act on her behalf. Some patients carry their own copy at all times and leave a copy with their lawyer.

If your mother has a stroke or heart attack, and 911 is called, things can become complicated. If your mother dies suddenly, and doesn’t want to be resuscitated, you may want to avoid calling emergency services. Paramedics generally are required to resuscitate and stabilize patients until they’re brought to a hospital. If paramedics are told about a health care directive and it addresses this scenario, then they’re legally obligated to follow it. A directive makes it more likely that your mother’s wishes will be respected.

If your mother doesn’t want to be resuscitated, it’s important to make sure everyone in the family knows this. People can panic in emergencies and it may be hard to resist calling emergency services if she dies suddenly. The impulse to call 911 may be redirected if you’ve made different emergency arrangements beforehand. This can include having a health care provider agree to visit when your mother dies, and arranging to have your mother’s physician write a letter to the medical examiner’s office. In areas where certain deaths need to be reported, the letter gives notice of the likely circumstances of a death. Then, when your mother dies you notify your mother’s physician or nurse, and call the funeral home when you’re ready. The funeral home will then pick up your mother’s body.

If your mother wants to stay at home to die, plans can help make it happen. Even with a plan in place, though, people can react unpredictably in the face of death. If there’s a directive in place it can help keep the focus on your mother’s wishes, even in an emergency.

When cancer spreads to the liver the metastasis may have direct or indirect effects. This depends on the size and location of the metastatic tumor, and ranges from no visible effects to several serious ones. The person may also experience other symptoms caused by the general effect of cancer on the body.

The liver is a large organ with a fair amount of reserve function. This allows it to keep doing its work even if it contains a tumor. The liver only sends signals of pain when the capsule, the casing around the liver, is stretched. If the tumor in the liver is not big enough to stretch the capsule, or if it’s growing slowly enough for the capsule to adjust, then there likely won’t be pain. For many people who have liver metastases, the most apparent symptoms are the effects of cancer generally on the body.

A tumor may affect a specific area in the liver resulting in more obvious symptoms of the metastasis. If the bile duct is blocked, then bile may build up and a substance in the bile called bilirubin may cause jaundice, which leads to yellow skin and eyes. A build-up of bile can also cause itchiness, drowsiness or confusion. A blocked bile duct can lead to an infection also. There can be pain in part of the liver if the capsule is stretched or if there’s an infection. This pain is usually treated with medication such as opioids.

If there’s a large amount of tumor in the liver, then its overall functioning will likely be affected. The liver may have trouble removing bile, even if there is no blockage. This produces jaundice. There may be swelling in the legs and abdomen. Liver failure occurs if the liver can’t function the way the body needs it to function. Liver failure makes people lose energy, strength and appetite. It can be hard to know how much of this is due to the liver problem specifically and how much is the general effect of cancer on the body.

Medications can help with specific symptoms such as pain, nausea and itchiness. It’s more difficult to treat loss of energy and appetite, which are common in advanced stages of illness.

[JM1]Link to further up the page – Cancer – what happens when someone has cancer.

The amount of morphine that can cause an overdose or death depends on what a person’s body is used to. It takes more morphine to cause an overdose in someone who is already taking morphine than in someone who has never had it before.

Morphine and other opioids are given to control pain. When taking morphine for pain, the body may develop a tolerance for the morphine and so it takes more morphine to control the pain. Also, the pain may increase and the person needs increased morphine to control it. Don’t hesitate to ask the health care team to increase the dosage if someone is feeling pain. The person’s body will get used to the increased amount. It’s when too much is given too quickly that the side effects of an overdose appear.

These are ways to recognize whether someone has had an overdose:

• The patient becomes very tired, stops talking and eventually becomes unresponsive.
   
• Breathing remains regular but becomes very slow. It may drop to less than six breaths per minute, and even stop if there’s a great deal of morphine in the body. The final stages of a terminal illness also cause breathing changes, so this may complicate the picture. The breathing of someone who is dying of illness is usually more shallow and less regular, and it sounds more like gasping than the breathing of someone with a morphine overdose.

A morphine overdose can be treated with a medication called naloxone (Narcan®). It’s usually given intravenously, as this is the quickest way to get the medication into the bloodstream. It can also be given subcutaneously, or intramuscularly, but this is not the best method for people who are frail. The overdose may require repeated doses at specific time intervals. The medication is given by a health care provider.

It’s important to talk with the patient about the possibility of an overdose. Naloxone acts almost immediately to counteract the morphine, so there’s no longer medication in the body controlling the pain. The person has to be prepared to put up with pain while the naloxone is acting and while the morphine dosage is being readjusted afterward. An overdose is a reversible situation not directly caused by the disease, so health care providers will likely treat it if it happens, unless the patient doesn’t want it. If you talk about this beforehand, you’ll know the patient’s wishes are being followed in the case of emergency.

If an overdose is a possibility, then it’s best to set up a plan with the health care team in case of emergency. The health care team needs to be very responsive, able to do home visits, assess the situation, give the medication if required, and monitor the effect of the medication. You can ask if the physician can leave a prescription in your home to help make the response as quick as possible. If the prescription is detailed, and if it specifies the doses of naloxone in certain instances only, then a home care nurse can give the medication.

If home care services in your area can’t respond within a few minutes during the day or night, then you need to call 911 if you suspect a morphine overdose. This is an emergency that warrants the use of emergency services. If you don’t want the patient to go to hospital in such an emergency, then you need to plan for this type of situation beforehand, to ensure that the health care team is available to support you.

If you’re calling an ambulance you may not know whether the emergency is being caused by an overdose or whether the illness has reached its final stage. If the patient doesn’t want to be resuscitated it’s important to have documents available to go with the patient in the ambulance. It’s a good idea to have on hand several copies of a health care directive or a no-resuscitation order for just this kind of situation. If you’re not sure what’s going on and you don’t know what to do, it’s best to call 911. They respond quickly and can help you decide the best course of action.

Learning about what might be expected as part of living with a disease often helps people feel more prepared or in control. There are many great websites that provide information about the various kinds of cancers, and how those cancers are diagnosed and treated. As you try to make sense of the information you find, it is important to remember that there is a wide variation in how cancer affects different people. Ultimately, the health care team involved in your care will be in the best position to provide you with information that is specific to your health circumstances.

General information found on the following websites may help you in thinking about questions you may want to discuss with your health care provider:

Canadian Cancer Society
A national, community-based organization of volunteers. Its website offers general information about the various kinds of cancer, treatments, cancer statistics in Canada, and the Canadian Cancer Encyclopedia. It also provides a toll-free phone number for specific questions.

Canadian Partnership Against Cancer
A connection to online services, information and resources for cancer control, prevention, screening, treatment, and supportive, palliative and end-of-life care.

National Cancer Institute
A U.S. based website that provides information about a wide variety of common cancers and their treatment.

Cancer.Net
A U.S. based website that provides comprehensive guides for more than 120 types of cancer and cancer-related syndromes.

Cancerbackup
A U.K. based website that provides a wide variety of information about cancer and living with cancer.

Your provincial cancer agency website likely has valuable information about cancer control and programs and services in your area. Click on a link below or go to Programs and Services, which also has other local and regional information.

BC Cancer Agency (and Yukon Territory)
Alberta Cancer Board (and Northwest Territories)
Saskatchewan Cancer Agency
CancerCare Manitoba
Cancer Care Ontario
la Fondation québécoise du cancer
Newfoundland Cancer Treatment and Research Foundation
Cancer Care Nova Scotia
Prince Edward Island Cancer Treatment Centre
New Brunswick Cancer Network

There’s often a difficult shift in perspective required at some point in a progressive disease. When someone has COPD, then throughout the illness there’s usually a focus on pulmonary function tests, treatments for infection, and efforts to slow the progression of the disease. As COPD reaches advanced stages, these efforts have less effect on someone’s condition, and focus shifts to patient comfort. There’s less attention to tests, details and numbers, and more attention to how someone looks and feels.

With advanced COPD, oxygen is used mainly to relieve shortness of breath and the level is adjusted gradually. It’s done gradually because some people with COPD only get the signal to breathe if oxygen levels are low. If this person gets too much oxygen, the breathing signal can be dangerously depressed, and breathing stops. Most people don’t have the specialized knowledge to assess how much oxygen someone needs. Trained specialists who know the patient’s history and current condition have the knowledge to determine the correct level. It’s important to talk regularly with the health care team about how to care for someone at home.

Oxygen is just one of the medications used to treat symptoms of advanced COPD. There may be other medications, such as opioids for shortness of breath and medications for anxiety that can ease breathing and provide comfort. It may be helpful to request palliative care resources. In most areas the palliative care team works with the health care providers to ensure the best care for someone at home.

The Canadian Hospice Palliative Care Association has published Hospice Palliative Care Volunteers: A Training Program (Print version with CD ROM costs $35.00). This manual contains nine learning modules specific to the volunteer's role in hospice palliative care, and a toolkit to guide the volunteer through the learning modules. It has been developed to help hospice palliative care programs across the country ensure that volunteers receive consistent training and information required to provide high quality services.

There are many hospice palliative care organizations across Canada with expertise in the recruiting, screening, education, and supervision of new hospice palliative care volunteers. For example, other volunteer educational resources available in Canada include:

• A Guide to Hospice Volunteer Training in British Columbia, developed by the British Columbia Hospice Palliative Care Association
• Volunteer Training Manual, a 30-hour training program produced by Hospice Palliative Care Ontario
• Providing Person-Centred Cancer Care: A Learning Kit for Volunteers, developed by the Canadian Partnership Against Cancer - Cancer Journey Action Group
  

For more information, browse the For Volunteers section.

The Canadian Thoracic Society defines COPD as "a respiratory disorder largely caused by smoking, which is characterized by progressive, partially reversible airway obstruction and lung hyperinflation, systemic manifestations, and increasing frequency and severity of exacerbations".¹

Each person’s situation is very different, which makes it difficult to predict the progression of a chronic disease, such as COPD. While it’s impossible to predict accurately the course of the disease, it’s not helpful to be told that “only time will tell.” Some things can be anticipated, and it helps to prepare for them, as well as for the possibility that circumstances may change unexpectedly. A person’s health care team understands the underlying factors in that person’s disease, and can offer useful information about what to expect, and how to prepare for it.

In general, people living with COPD deteriorate physically over time. A decrease in energy and strength is common with progressive diseases. Typically people also experience decreasing capacity for activity, increasing shortness of breath, weight loss, and decreasing blood oxygen levels. It’s important to connect with health care providers to address these symptoms before they become a serious problem, and to ensure that the person remains comfortable throughout the course of the disease. The health care team can help in deciding whether home oxygen is helpful, or if home care assistance is needed. The team can also recommend any medications that may help, such as medications to relieve shortness of breath and to increase comfort.

It’s very difficult to estimate how long someone can live with COPD. Tests such as x-rays, blood gases, or pulmonary function tests can’t predict survival reliably unless the results are very abnormal. If that’s the case then the person’s overall energy and functioning also indicate that death may be near. It’s most informative to consider a guideline called the momentum of change. According to this guideline, 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. The momentum of change also may take into account the number of hospitalizations in the past months, as well as changes in medications or increase in oxygen requirements. The momentum of change is a general guideline only. Sometimes something happens that causes a person’s condition to change unexpectedly. It’s important to recognize this and prepare for the unexpected.

These steps offer one approach to dealing with the uncertainty in the progression of COPD:

• Talk with the health care team to get an informed assessment of the patient’s condition.
• If it’s reasonable to assume that someone has months rather than years of life left, consider planning as if this is the case, even while hoping that there may be more time. Planning in this way allows families and patients to say what they want to say, and do all the things they want to do, whether it’s writing a will, planning a funeral, preparing a journal or writing to family members.
• Consider preparing a formal health care directive. This document conveys a patient’s wishes for care in the future. The health care team has information that can help in preparing a directive.
  

Reference:

1. O'Donnell DE, Aaron S, Bourbeau J, et al. Canadian Thoracic Society recommendations for management of chronic obstructive pulmonary disease - 2007 undate. Can Respir J. 2007;14 (Suppl B):5B-32B.

It’s hard to face the thought of losing someone you love. Being far away makes it even harder. First, it’s important to talk to people. Talk to your family. Talk to your friends. People who’ve gone through what you’re going through and can give you the benefit of their experience. Even though you’re far away from your grandfather, you don’t have to be alone.

Anger is a normal response to being far away from a loved one who is ill and dying. The anger can be an expression of frustration, with the unfairness of the illness, with your inability to change things, or perhaps guilt that you don’t live closer. The important thing is to let your grandfather know you care. This probably means a lot to him.

Even though you’re not with your grandfather, there are things you can do and say in the time you have left. Find ways to be a part of your grandfather’s life and show you care, even from a distance. You can phone, write letters, or send emails. You can even send small things you know he likes. Visit if you can. Realize that even if you lived nearby, you still couldn’t spend every minute together. You may live far away, but distance is no obstacle to expressing your feelings and your grandfather knowing you care.

When patients are uncomfortable or in distress, even though their physical symptoms are well controlled, they may be experiencing spiritual pain. Spiritual pain is often experienced in the midst of a life-limiting illness and is “a great mimicker, often presenting as physical pain, anxiety or depression, anorexia, insomnia or shortness of breath.”[1] It may stem from troubled feelings, thoughts or relationships. Because spiritual pain is often expressed in physical or behavioural ways, it can be difficult to diagnose. As Kearney and Mount note, the recognition of spiritual pain is often more intuitive than empirical. “We instinctively begin to use words like ‘suffering,’ ‘anguished,’ and ‘tortured,’ rather than a more orthodox, scientific terminology.”[2]

Any of the following may point toward spiritual pain in the hospice setting [3]:

• constant and chronic pain;
• withdrawal or isolation from spiritual support systems;
• conflict with family members, friends or support staff;
• anxiety, fear or mistrust of family, physicians and hospice staff;
• anger;
• depression;
• self-loathing;
• hopelessness;
• feelings of failure regarding one’s life;
• lack of sense of humour;
• inability to forgive;
• despair; and
• fear or dread.
  

These indicators and symptoms are related to the patient’s awareness of death and the struggles growing out of that awareness – struggles with losses of relationships, self, purpose and control.[4] Spiritual pain and suffering develop from the patient’s sense of helplessness as his illness diminishes or destroys what is meaningful in his life. Relief can only be found if the spiritual struggles at the heart of spiritual pain are addressed.

The relief of spiritual pain requires paying attention to the patient as a person. This involves looking beyond physical symptoms and medical treatments to the impact the illness and treatment is having on the person. Check on how your patient is coping with his situation. Begin by saying that people with his type of illness often have questions or worries about what is happening or what might happen in the future. You could follow this up by asking him if he has such questions or concerns. You might try a less directive approach by asking him what he thinks about when he goes to bed at night. If your patient is hesitant to open up about how he is experiencing his illness, you could let him know that if at any time he has questions or concerns, he can direct them to you or other team members. Assure him that you will do your best to get him the answers or support he needs.

If your patient does not respond to invitations to share how he is doing and continues to be agitated, anxious or panicky, you might need to be more direct in your approach. You could inform him that the team believes his agitation and anxiety may be related to the struggles he is having as a result of his illness. Health care professionals should exercise caution in not making him feel like he is pretending or that his pain is all in his head. One way to gently approach this topic is to say that suffering is never strictly physical but has an emotional or spiritual component, and that his health care team is just trying to get at the root of his distress. This might lead to a discussion about who might be best suited for talking with him about his suffering – a community spiritual leader he knows, a spiritual care provider on the team or another team member, a hospice volunteer, or a close and wise friend.

Determining the cause of spiritual pain is not easy, and eliminating it is not the goal. Spiritual pain is part of being human – it is how we deal with our mortality and limitations, respond to shattered expectations, and search for meaning in life and death. With spiritual pain comes a chance for growth and sometimes for transformation. As a health care professional, you can help patients embrace these opportunities by focusing on them as people. Invite them to share their questions and worries, and listen respectfully and attentively. By doing so, you can help them find the resources they need to make this season of life meaningful, and assure them that they are not alone and will not be abandoned.

References

1. Doyle D. Spiritual care: can we teach it? HKSPM Newsletter 2004;1:4-6.

2. Kearney M, Mount B. Spiritual care of the dying patient. In: Chochinov M, Breitbart W, eds. Handbook of Psychiatry in Palliative Medicine. New York, NY: Oxford University Press; 2000:357-373.

3. Hay MW. Principles in building spiritual assessment tools. Am J Hosp Care. 1989;6(5):25-31.

Other reference

Millspaugh CD. Assessment and response to spiritual pain: part I. J Palliat Med. 2005;(8)5:919-923.

A health care directive is a document that describes the treatment decisions that a person wants made in the future. It’s used to guide care if the patient can’t communicate in any other way at when a decision has to be made.

A person needs to consider what others will need to know about his or her wishes. These wishes can be general or specific. Over time these wishes may change, as the patient develops a better idea of what he or she wants and doesn’t want. This new information can be added to an existing directive, or a new one can be written to replace the old one.

A directive can also name a person to act as a proxy for the patient. This person may become the patient’s spokesperson, interpreter and advocate. It’s important that the patient talk to the proxy, to make sure the proxy knows the patient’s wishes intimately. The proxy also needs to know of any changes in those wishes.

Your patient clearly has a lot to live for and wants to live well in spite of her health issues. She does not see palliative care as an opportunity to improve her quality of life and physical comfort, but rather as a sign that she has given up and lost hope. She continues to cling to hope for a cure although this appears medically impossible. While she may accept that she is dying, like many patients, she wants to believe that she might beat the odds. Living as if she will do so seems to give her the inner strength to keep going even as her physical vigour and well being wane. Her resiliency and fierce love of life is certainly admirable, but her refusal to talk openly about the real possibility of death and to make decisions accordingly can be very difficult for her health care providers and her family.

It is important to realize that your patient’s way of handling her illness is not necessarily wrong or pathological. Hers is not an uncommon response to palliative care. However, it is important to remember in situations where there is an exaggerated resistance to palliative care, and an unrelenting pursuit of curative treatment, that underlying causes and dynamics should be explored. For example, your patient may have unresolved family issues that may be inadvertently affecting her medical decision making.

The health care team must understand what is informing her desire to live and to support her goal of living as well as she can in light of her illness. One approach is to use palliative care concepts rather than pushing her toward a palliative care program. This would allow the team to focus on effective communication, advance care planning, surrogate decision making, symptom management and legacy work. The team could also provide her opportunities to talk about the losses, fears and grief she is experiencing as her health deteriorates and support her in working through them.

However, you do need to address her decision to continue treatments that are no longer effective. Facilitating a family conference where your patient and her children can discuss her care goals and express how they feel about them may be an effective way to resolve these issues. You may also find our Topics article, Health Care Decisions: An Approach to Decision Making and Advance Care Planning helpful. It provides the following framework:

• Be informed about the issue: Encourage your patient to get as much information as possible from the health care team. They can tell her how her illness is progressing, what her options are for treatment and care, and what might be expected with each option. If palliative care is explored as one option, she may find it helpful to know that some recent research shows that patients who are referred to palliative care early had better quality-of-life outcomes, less depression, better pain and symptom control and longer lives.[1]
• Determine the goals: Give your patient and her family the opportunity to express what is important to them during her time of illness. These may be big goals, such as living long enough to participate in an important event or complete an important task, or they may be small goals, such as symptom relief and comfort. The focus here is on what the patient and her family consider important for whatever time she has left. The health care team can play an important role in explaining how various treatments might help or hinder the achievement of your patient’s goals.
• Determine whether the hoped-for goals are possible to achieve and plan accordingly: The goals of your patient and her family will fall into one of three categories: the goals are clearly achievable; the goals are not possibly achievable; or it is uncertain whether the goals are achievable. When there is uncertainty about whether a medical treatment or intervention will have the hoped-for outcome, recommend to your patient that she consider a time-limited treatment plan based on:
  • clearly defined hoped-for outcomes;
  • a specified time in which to evaluate results;
  • an alternative plan if things don’t work out as she’d hoped.
    

Patients referred to palliative care sometimes feel that the specialists who have been treating them are giving up on them and handing them a death sentence. However, as discussed above, you can use the concepts of palliative care to support patient-centred care at every point in an illness whether or not the patient is in a palliative care program. The goal is to provide treatment and care that supports the goals of the patient and the capacities of the health care system. This calls for ongoing dialogue, decision making, evaluation and new approaches. At all times, your patient should feel that she is a partner in deciding what is best in her situation, and that she can count on the support of her health care providers no matter what the outcome.

References

1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer . N Engl J Med. 2010;363(8):733-742.

This is a difficult and yet very common experience of caregivers. When someone is not well, they often take out their frustrations and anger on the person who is closest to them. Perhaps they feel it is a safe place to “just be themselves.”

In terms of how to respond, it’s important to recognize that anger is a natural and powerful emotion that impacts everyone in the situation. Part of responding is trying to understand the source of the anger and frustration. Your husband’s hostility is likely not meant to be hurtful or directed at you personally but may be more an expression of the fact that his world is turned upside down. He has experienced a number of losses and likely feels frustrated by a lack of control over the whole situation. Another very human source of anger is underlying fear. It is often hard to talk about fears so they may come out as verbal or physical outbursts. Plus, you may be experiencing a wide range of emotions yourself which can affect how you respond.

One of the biggest challenges is not to take the anger personally. You might try imagining yourself “being short and letting the words go over your head and not getting lodged in your heart!” This of course is easier said than done. And this doesn’t mean that you shouldn’t share your own feelings with your husband. Acknowledging that he is angry and needs a safe place to vent is a good first step. You could explain that you feel angry as well, and that you know you are both really angry at the situation, not each other. The key message is that anger is normal and expected, better addressed than avoided. You could also let your husband know that you are with him, not against him, in terms of re-focusing the anger and facing this challenge together.

We encourage you to talk to the health care team looking after your husband or your own doctor. It is important that they are aware of his behaviour and the difficulties you are encountering. Ask them for advice and assistance in referring you and / or your husband to the emotional support services that might be needed, such as volunteer visitors, social work, spiritual care or counseling. It is important to find someone to talk to, a safe place for you to share your thoughts and feelings.  It may also be helpful to connect with others traveling a similar road.

Finally, make it a priority to take care of yourself.  Give yourself permission to take more breaks and share the caregiving load. Consider exploring eligibility and availability of home care services to assist in your husband’s care and respite for yourself.

See also: Self-Care

Whatever you do, if your husband’s anger persists and you feel threatened or harmed in any way, reach out for help. This might mean getting in touch with your health care team, a local crisis line or police.

You may find that with children, active treatment of the disease continues, even with the knowledge that there may not be a cure. The course of illness in children can be very hard to predict. Depending on the illness trajectory, the amount of involvement from a home care or palliative care perspective may be limited at times.

Rural health care professionals are often uncomfortable caring for a child who is dying, as this is not something that happens regularly. These feelings need to be acknowledged, and accessing the resources available to you is important. It is crucial to work closely with the specialty teams at the health care facility where the child has received treatment. There should also be a pediatric palliative care team that is accessible to you, no matter where you are in Canada. These pediatric palliative care teams can help provide support such as phone or telehealth consultation for the family and health care providers, and assist in care planning and symptom management in order to help keep children in their home communities.

Family-centred care

Family-centred care is an important approach for all members of the health care team to follow when caring for the dying child and the family. A child dying at home creates a challenging situation that affects parents, siblings and caregivers.

With a young child, the parents are usually very involved in his or her physical care. Children usually prefer to have the assistance of parents because they are familiar. However, parental involvement affects what a nurse or health care assistant might do. Discuss with the family effective techniques that the health care team could use to approach their child. Also involve the family in deciding what services are needed and how they should be implemented.

Keep in mind that the needs of the child can be lost in efforts to treat the illness, and it is important to remind everyone about what is best for the child. Children usually have a keen understanding of their illness and that things are not going well. Open and honest communication is crucial. Having an outlet for the child to express his or her emotions, feelings and fears may be helpful. The developmental stage of the child is an important consideration here (see age appropriate assessment below).

During this difficult time, parents are trying to maintain various roles and may need extra support. They may feel pulled in many directions with work, caring for other children, and trying to maintain normalcy. They may also be facing financial hardship. Alerting the family to the federal government’s compassionate care benefit may help ease the financial burden a child’s illness may bring. You may also want to investigate if there are other local or provincial resources that can assist the family.

Siblings are another key part of the family you must consider when a child is dying. The day-to-day life of siblings can suffer because of a child's illness; they may have strong feelings about the child dying in the home. Siblings may feel anger and jealousy, and can exhibit behavioural problems. They may also feel forgotten or unimportant as the ill child receives so much of their parents’ energy and time.

Being aware of siblings’ feelings is vital for health care professionals and requires a time commitment on their part. Ensuring that siblings have someone to talk to and are aware of what is happening in the home is crucial. Normalizing siblings’ lives as much as possible should be a goal of the health care team and family. However, at times, this may not be possible, and the help of extended family and friends will be necessary to care for siblings.

Families may have questions about siblings being present when the child is dying or sibling attendance and involvement at the funeral. Families should let siblings have the option of how much they would like to be a part of what is happening. Some children want to be very involved, and others do not. Developing creative ways to involve siblings that respect their individual personalities is often the best approach. During the illness of the child and during bereavement, siblings may find support groups helpful if they are available in your area.

Symptom management

As with an adult dying at home, management and anticipation of a child’s physical symptoms are crucial. Therefore, a health care team must have medications available before symptoms occur. Preparing the parents to deal with these symptoms is also important. Make sure you have a plan to address any “what-if” questions the parents may have.

Preparation of the health care team and the parents should happen before the child experiences these expected symptoms. In the midst of a crisis, decision making can be difficult. Initiating these discussions may by hard, but they will help make everyone involved (family and health care professionals) more at ease. Of course, you may need to adapt your pain management plan as the child’s illness progresses, so it is important to encourage open communication from the start.

The medications used to manage symptoms in children are the similar to those used in adults at the end-of-life. However, when medications are ordered for children they are based on the child’s weight. Therefore, if there are significant fluctuations in the child’s weight, you should take that into account when assessing or reordering medications.

Age-appropriate assessment

Age-appropriate assessment is an important component of managing the care of children. The developmental stage of the child will influence how you approach his or her assessment. Young children, who are not able to fully verbalize what they are feeling, require astute assessment.

Five-year-olds who have been ill for a long time will likely be able to verbalize that they have pain, where their pain is and how much it hurts. They will likely not be able to rate their pain on a numerical scale, so you will need to use other methods of pain assessment, such as pain scales that use faces instead of numbers to show the degree of hurt. Other activities, such as colouring on the outline of a body where pain occurs, may also help to you determine where a child experiences pain.

Children this age will also withdraw from play or activity if they are experiencing pain or have other symptoms such as nausea. So asking parents about the level of activity their child is engaged in will also be important. No matter the age of the child, parents are often the key informants regarding his or her general health status, behaviours and medication use.

Bereavement support

Recognizing the impact that caring for a dying child may have is important for the health care team. Frequent case reviews, informal and formal support, as well as a death review are beneficial for everyone involved.

The family can also benefit from bereavement follow-up and you should discuss and offer this service if resources allow.

Here are a number of resources that provide excellent information about caring for dying children:

• The Canadian Network of Palliative Care for Children (http://cnpcc.ca) has helpful information with links to many resources.
• The Rainbows Children’s Hospice in the UK offers a practical resource you might find helpful: Basic Symptom Control in Paediatric Palliative Care. These guidelines include suggestions for managing the common symptoms experienced by children at end-of-life.
  

Talking about death and dying is difficult for many patients, families and health care providers. Death is not often talked about openly in society, so when faced with having to start that difficult discussion, many feel lost, worried and uncertain about how to begin. To complicate matters, all patients have their own coping and communication styles, which may vary depending on their relationships with particular people. Family members, too, may have different needs and communication styles. Some family members may want to talk about the patient’s values, beliefs and wishes (either to feel at peace with the relationship or to feel confident in making decisions that respect the patient’s wishes). Other family members may not be prepared to talk about a patient’s illness and impending loss (either out of fear or as a way of coping). Health care providers can greatly assist families by facilitating these difficult discussions. However, there is not any one strategy or resource that will work for all families.

When a family asks us to withhold the diagnosis or prognosis from the patient, we must balance the family’s wishes with the patient’s right to information. Doing so requires us to consider the impact of culture on a family. Some cultures dictate who in a family bears responsibility for decision making and communication. It’s important for us as health care providers to gain an understanding of how cultural values may affect a patient’s situation. Our role may not be as straightforward as honouring a patient’s “right” to know. Similarly, a family often has its own “culture,” or way of operating, and we need to acknowledge that in our communication. If we don’t, the family will likely be more resistant to engaging with us.

As health care professionals working in palliative and end-of-life care, we believe patients should direct their own care as much as possible. This involves sharing information with them and including them in decision making. Families are sometimes reluctant to have “the conversation” about their family member’s diagnosis because they think it will take away their loved one’s hope, and he or she will give up. However, we know that the risk of people feeling isolated outweighs this concern. We also know that a big part of coping is redefining hope as we go along. We feel that hope can always be present in some form. Hope for a cure changes to hope to live as long as possible, to hope to be pain free, to hope for a good day.

Another fear often expressed by families is that if we talk about something it will make it happen. For example, if we discuss a patient’s prognosis, the patient will become sad or worried. In reality, it is often family members who are afraid to talk because they are sad and worried themselves. By limiting the conversation, they feel they can protect the patient when, in fact, they may be protecting themselves from their own painful feelings. Our role is to gain an understanding of these feelings, and to gently help family members determine what they can and cannot talk about. It is also important to negotiate with them about how and when they want us to give health information to their ill family member.

Explain to families that patients are often aware they have a terminal prognosis, and if they can’t talk about it, they often feel frightened and isolated. Here is one way to start that conversation:

“I can understand why you don’t want to tell your mom about the severity of her illness. You want to protect her and prevent her from giving up hope. But imagine if the roles were reversed and you overheard your health care provider telling your mother that you were terminally ill. How would you feel? You may appreciate and understand your mother’s motivation to protect you, but you might feel angry or disappointed that she is excluding you. Being left out may limit your ability to participate in important conversations about your care or to do things you need to do before your life ends. You may also feel that others see you as incapable of handling the situation."

There is a distinction between the right to know information and the right to accept or decline information. When the appropriate time comes to discuss health information with the patient, one way to approach this communication is to ask:

“Some people want to know everything they can about their illness, such as results, prognosis, what to expect. Others don’t want to know very much at all, perhaps having their family more involved. How involved would you like to be regarding information and decisions about your illness?"

Be aware of the patient’s sense of his or her diagnosis and prognosis, and how he or she talks about the illness. Stating that the patient is near the end of life, terminally ill, or dying isn’t the best way to start a conversation unless the patient is already using these terms. If the patient has not shown a readiness to discuss being near the end of life, you might begin by observing that the patient has been quite ill, and that he or she has faced medical challenges that often prevent people from feeling like themselves. Suggest that it might be helpful to talk about what is important to him or her, particularly regarding matters that concern family and close friends. Questions you could ask include:

• “Are there particular things you feel need to be said to your loved ones?”
• “Are there instructions you would like to give your family at this time?”
  

If the patient responds affirmatively to such questions, explore further how this information might be shared.

Each family dynamic is unique. When disagreements arise between family members about whether the patient should be informed of his or her illness, we encourage families to be open and honest in communicating with each other and to acknowledge the condition of the patient. It is often helpful for the health care team to arrange a family meeting so that everyone can express his or her ideas, questions, and concerns, as well as share information in a non-threatening way.

A family meeting also offers a way for the health care team and family to reach agreement on a care plan. It reinforces the idea that everyone shares the same goal – the patient’s comfort – and builds consensus on how to reach that goal. A meeting is also an opportunity for the family and team to gain an understanding of and respect for different opinions and coping and communication styles. While coordinating such a meeting may seem difficult, having everyone present can save time and energy, and positively affect the patient’s care at the end of life.

Ultimately, our role as health care providers is not to “fix” anything within the family but to seek an understanding of their experiences, values and wishes. We provide the family with information and discuss possible courses of action. This means being honest about which of the family’s expectations we can reasonably meet and which we must negotiate alternative approaches for if we cannot.

Here are a variety of resources that focus on communication with patients and families:

• Communication with Patients and Families. A PowerPoint presentation for health care professionals about communication in palliative care.
• Family meetings in palliative care: Multidisciplinary clinical practice guidelines. An article that presents a framework for preparing, conducting and evaluating family meetings.
• What Do I Say. An article from the Topics section of our website that families may find helpful.
• Living With Limited Time: Exploring Feelings. An article from the Topics section of our website that families may find helpful.

References

Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005;103(9):1957-1964.
Available free online: http://onlinelibrary.wiley.com/doi/10.1002/cncr.21010/full

Gueguen JA, Bylund CL, Brown RF, Levin TT, Kissane DW. Conducting family meetings in palliative care:  themes, techniques, and preliminary evaluation of a communication skills module. Palliat Support Care. 2009;7(2):171-179.

King DA, Quill T. Working with families in palliative care: one size does not fit all. J Palliat Care Med. 2006;9(3):704-715.

Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J of Pain & Symptom Manage. 2007;34(1):81-93.

Reynolds K. Requests for non-disclosure of poor prognoses to patients. End of Life Journal. 2013;3(4):1-7.

One of the jobs of the kidneys is to remove waste products produced by normal body function. These waste products can be toxic. In the case of kidney failure, the kidneys can’t remove waste products effectively. As the toxins build up a person’s energy gradually decreases and the desire to rest increases. In the final days or weeks of life most people sleep.

A common symptom of kidney failure is delirium. This is a mental state that’s marked by confusion and restlessness. It develops because the toxins that are accumulating are affecting the brain. In the final days of kidney failure, it’s not possible to fix this, so the only effective way to control delirium is to provide sedation. This can be hard for family, since it means there’s no more interaction with the patient. Usually the person must be kept in deep sleep, since mild sedation can worsen the confusion. As hard as this is for family, it may be the only way to ensure a comfortable and calm final few hours or days. Even if the person is sedated it’s worth continuing to talk to him or her. It’s thought that people who aren’t alert are still aware and can hear to some degree. Conversation can be calming and meaningful for visitors and patients alike.

Pain is not common with kidney failure. Some people have other illnesses that need pain treatment, but it’s usually not because of the kidneys. If there is pain to be treated, it’s best to avoid morphine. Morphine has by-products that build up when the kidneys aren’t working well, and this can cause confusion and opioid toxicity. Toxicity from an opioid can cause twitching, irritation and general confusion. Hydromorphone (Dilaudid®) is usually a better pain medication in this case because its by-products take longer to build up, and it’s easy to administer and to adjust dosages. Another option is fentanyl by intravenous infusion, as dosages can be adjusted more quickly than with a fentanyl patch. Methadone may be used, but it can only be given by mouth, which is not useful when people are not alert.

People with kidney failure may have nausea, which can be managed well with anti-nausea medications.

The length of time someone can live with acute kidney failure is influenced by many variables. If the person has been having dialysis and it is stopped, then the person can live for as little as a few days or as many as about ten days. Other medical conditions can influence this and it becomes very difficult to estimate.

Each person in your family has a unique relationship with your mother, so each of you will grieve her in a unique way. Also, each of you is unique in how you cope with stresses. These ways of coping apply to grief also.

Sometimes grieving starts before someone dies. This is known as anticipatory grief. It seems that your sister is going through this. She’s facing the added challenge of working through her grief while she’s also helping care for your mother. This experience may be overwhelming her, and it may be hard for you to watch her go through it.

Your sister’s anger is part of her grieving. Even if she’s irritable, impatient or openly hostile toward some of you, her feelings may not be directed at anyone in particular; sometimes it’s just safer to vent feelings with family members. Your sister may keep you at a distance and keep you from helping her. All of this may be easy to understand in theory, but it’s hard to accept emotionally. The best you can do is just be there for her, and be ready to talk with her when she’s ready.

Talking about feelings and what’s behind them can be therapeutic, but some people may be more comfortable talking to people outside the immediate family. Your sister may prefer to talk to a trusted friend or a spiritual care provider, who can be a valuable source of support.

Many communities have support groups, bereavement groups, or other resources that may be useful to members of your family. You may want to look for a social worker who can offer counseling to your sister or others in your family, or can help you find other useful support and resources.