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The hardest thing for a patient to hear, and for a doctor, health care professional, family member or friend to say, is that you need palliative care. 

It marks a point in time in a person’s life where the focus of effort is quality of life in the face of a disease that cannot be cured.

It is necessary to hear this message so that you can make informed decisions about disease treatment, symptom management, end of life care and how you want to spend your time in the coming months.

Palliative means that regardless of the nature of your disease, you are coming into a phase of your illness and life where:

• The progression of your disease is such that you have only months and weeks to live. Although hard to predict, your doctor will try to help you understand what time you might have. By way of example, most Palliative Care Program and Benefit referrals are made by your doctor in the last six months of life.
  
• When no more disease-curing treatment is being given. Some therapies, for example some chemotherapy, or new drugs for serious heart or kidney disease are palliative, they give you more time, but do not reverse the disease process. They may be given alongside palliative care that is directed at symptom management. Treatment does not necessarily stop for palliative care to begin. Overlap is common, and one leads into the other. Good communication with your doctor will help you understand where you are on this spectrum.
  
• When you have been advised to "put your affairs in order". Depending on your circumstances, this means any of the following: organizing your finances, a Health Care Directive, a Power of Attorney, a Will, and/or arranging what you would want at end of life whenever it comes. It takes courage and honesty to deal with this step, but once done it is a great relief, and allows you to focus on meaningful time spent with your family and friends.
  

The Role of Palliative Care: 

The primary purpose of palliative care is to ensure the remainder of your life is dignified and as comfortable as possible.

How long do I have to live?

It is difficult to predict when a person diagnosed as palliative will die. Much depends on the disease itself, how long you have been living with the disease, other illnesses, and serious concerns such as weight, nutritional status, presence of organ failure, current infection, bleeding tendencies and emerging medical conditions.

Months to live: 

In general, when you are stable month to month, you have months to live. During this phase, you may notice little change in function other than increasing fatigue and gradual loss of appetite.

Weeks to live: 

When you are changing weekly, you have weeks to a month.

The Final Stages: 

When you become bed bound, and unable to do any activity, it usually means you are in the final stages. When organs start to fail, the time left quickly shortens, especially if the kidneys, heart or lungs are affected. If your condition is deteriorating every 2-3 days, you have days to weeks to live, and if changing daily, then hours to days.

Appetite: 

Gradually, your interest and ability to eat and drink will decrease. Initially this causes a flurry of concern as everyone tries to feed you!!, but then appreciates you are truly dying and this process is irreversible. This stage can go on for some time, especially if there is no overlying or acute medical event. Your caloric and energy requirements are few if you are spending all your time in bed.

Consciousness: 

When your intake is reduced to sips or simple mouth care, your state of consciousness may start to shift to drowsiness or confusion, which can be an expected part of the experience close to death. Medication may or may not be necessary during this time. Family, friends and your health care team would be with you in some combination most or all of the time and your comfort, would be their utmost concern.

Incontinence, Dependence:

As your illness progresses, you will need to rely on others for much of your care, including personal hygiene and assistance in going to the bathroom. Elsewhere in this site, we explain in more detail the care issues likely to arise and how those around you can best meet them.

Pain: 

Almost universally patients are concerned that they will be in pain, and fear it will not be treated properly. You health care team is there to make sure that, if anything, pain will be treated if present. This is both an art and science, and not simply “more morphine”, or “going to the hospital”. Great effort goes into understanding the nature of your pain, and the best measures to meet it. There is some calculated trial and error to ensure the right drug or method of relief is used to the greatest effect for each patient. As a patient responds in their own way to medication, and there is no test to be done to know what will work, a detailed assessment, close observation and periodic changes will be recommended. This is not guesswork on the part of the team, it is individualized treatment. The best results are achieved with regular and good communication with your caregivers.

Elisabeth Kubler-Ross, one of the world's foremost experts on death and dying, described the emotions of dealing with death as a progression of denial, anger, bargaining, depression, and acceptance. Her work deserves mention as it has inspired what we understand now more thoroughly as the journey we all travel in coping with illness and death.

Denial

There is a television commercial that portrays a woman receiving news that she has cancer. She is sitting across the desk from her specialist or GP, and as soon as the word ‘cancer’ is spoken, the sound track becomes muffled and the images blur. Everything that is said or happens in the appointment after that seems to be in a sensory and mental fog.

Your first emotional response in dealing with a life-threatening disease may have occurred when a symptom appeared – a lump, bleeding, pain, or even tiredness. You might have kept it to yourself, hoping it would go away, or just making sure you weren’t imagining things. You might have been afraid, or decided not to talk about it. If the symptom is never spoken about, then it can’t be real, can it?

Some people try to deny what is happening even once a diagnosis is confirmed. A world can change in an instant, and one needs time to sort that out, therefore the ‘fog’ in the TV scenario.

In the hope that eventually, everything will be okay, sometimes we; ask for a second medical opinion, wonder whether tests are mixed up with someone else’s, or minimize the significance of serious illness in reaction to our diagnosis of serious illness. Denial is self-protective and allows you to absorb, a little bit at a time, what illness might mean to you. It also fades over time, and as long as it does not stop you from getting the medical help you need, it is adaptive and normal.

Anger

Anger or resentment is related to a sense of injustice. Some people become ill when they have no risk factors for their illness or they have lived well and responsibly, yet develop a life-threatening illness. Carefully laid plans must be abandoned, dreams fizzle. Sometimes anger is directed at the self, those close to you, people who are healthy, or at God, or a higher power.

Anger should be discussed with a health care professional, especially if you are so angry that you can’t communicate your health care needs or symptoms. Often you can specify an underlying cause of your anger: loss of control, fear of being seen to be weak, loss of work, opportunity or family life. The financial strain that illness can place upon families, especially if you do not have employment insurance benefits, can certainly be a cause of anger and anxiety. Acknowledging and discussing these underlying causes of anger is critical to solving those problems which can be solved and moving past those that can’t.

Anxiety

Dying people have enough to worry about without being anxious about things they should not be anxious about. Lack of information and control are prime causes of anxiety and they are also unnecessary. Knowledge of what to expect related to your disease as well as the treatment and care gives you power and choice…and lessens anxiety. Your doctor and professional caregivers have the answers – ask the questions!

Control, even in the form of having a say on smaller issues, such as when visitors should be allowed, relives the anxiety of powerlessness. You can decide all the important issues; the important thing is to anticipate them and be ready to make decisions.

Fear of Abandonment

Sometimes patients fear that health care providers or loved ones will abandon them; that people will stop coming to see you when they see changes in your body, such as loss of weight or loss of strength that may occur as disease progresses, or that health care providers will decide to stop treatments that relieve your suffering.

Palliative care professionals have chosen their field because they are committed to help terminal patients live the very best life they can. They have a wealth of experience in managing pain and in preserving the dignity of the patient. They will never abandon you. “You are what they signed up for.”

Friends and family will share the same state of shock that you had, and at times will, struggle to react “appropriately”. Elsewhere on this site [link], we portray what friends and family can expect to experience and how they can best cope. In site of “inexperience”, we find people do not abandon their loved ones. In fact, the larger problem is making sure you both get needed respite and breaks from each other from time to time.

Hope

Many kinds of palliative treatment can bring about hope, even if not a cure. It is possible to improve quality of life. Often, increased hope is related to finding an increased sense of meaning or purpose in life. Staying connected to things that provide a sense of meaning can be a powerful way of maintaining hope throughout the course of illness.

Attitude

Life always has purpose, and even if you’re very ill, you still have value.

With good palliative care, one can choose how to die. The following excerpt from the experience of the husband of a palliative care patient is an example of how one patient and her husband lived to the fullest, right to the end.

When you have accepted that you are not in control of your disease, you can focus on the positive things that provide meaning each day visiting family and friends, reviewing photographs or retelling stories, giving or taking part in projects that have meaning to you, such as writing family histories or a journal.

Death Can Not Touch Your Essence

The challenge is to locate a part of yourself that feels untouched by illness: your character, your personality as an example. If, in spite of illness, you feel that the essence of who you are remains intact and untouchable, you will be comforted and you will understand that life still has meaning. A mother who until almost the very moment of her death is still able to preside over her family with a wag of the finger from her bed has kept her sense of self, even in dying.

When Death is Near

As death approaches, many people find purpose in their lives by reaffirming their values in an open manner. Not everyone wants to talk as death nears, and some people withdraw. Silence does not have to be perceived as negative; it can be calm or even tranquil. Some people, through their dying, seem to, or seem to want to teach people who are close to them about how to face the end of life. The attitudes that we have about dying are largely shaped by our own witnessed death experiences and in recognizing this, help shape others’ attitudes toward coming to the end of life. Some patients find dignity at the end of life through the knowledge that they are helping others.

Spirituality, Grief

Death confronts us with an ultimate loss and the fundamental unknowable. Great religions have examined these issues for thousands of years. Death is universal but every one is unique. There are no rules, no easy protocols. You must develop your own and in doing so, you will teach those around you and help them prepare for their turn.

From our own experience, we can say that clergy of all great religions are used to dealing with death and are almost invariably willing to help you through it should you wish it. As well, the connection death can create between all those involved has an intensely spiritual element.

Simplicity and honesty is best. Call together who you think are important to know, all together or in stages depending on your comfort level. The silences are at first awkward, but then fill themselves. Everyone has a way of putting their own mark on what they say. Saying something like, “You know I have not been well with….. I have been working with my doctor on sorting this out. My treatment will be palliative now with everything else I am doing, pain relief and other symptoms, but no new treatments to cure my illness. I want to focus on treating….. I will need to sort out my personal affairs, make all kinds of arrangements, you know, wills, directives, but mostly I want to spend time……!” Consider taking a family member or friend to your doctor or other health professional to help share this task and confirm what you say to your family and friends.

Who could think of a more difficult task than talking to your child about the fact you may soon die? This presents a complex situation as you are coping with your own illness and reaction to it. You may feel you want to protect your child from this knowledge and the challenges that would follow, but please consider the following;

Children are smart, intuitive, and they can sense something is wrong within the family. They will cope better, as difficult as it may be, if they know what is happening.

If they know when and what you know along with you, they will feel less alone. In general there is an opportunity to have a profound experience of being able trust adults at a life-changing time, and they will become more trusting of their own feelings as theirs are validated alongside of yours.

Guidelines

In addition to the suggestions below, remember you can also seek out assistance and support from your health care team members who have skills in this area.

Try to find out what your child already knows about your condition.

 Then correct what might be misinformation or misunderstanding.

Tell your child about the illness as soon as you can,

rather than having them hear about it from someone else, or through an overheard conversations. When children are not told, they feel excluded, and they may make something up in order to make sense of the changes they feel. Telling them allows them to ask questions. How others are behaving will make more sense to them. They will feel included, trusting and trusted.

Take cues from your child and give as much information as they seem to be able to take in. Talk in a language they can understand. 

Typically they will ask questions about things they are wondering about. You might start off by telling your child the name of the disease, and the area of the body that is affected. Give them a chance to respond. You may not need to tell them much more than this.

Encourage your child to come back to you if they are confused about anything, or have more questions once they think about things, or if they hear something different from other people. 

Expect that they will return with more questions after the information you give sinks in.

Tell your child what your plan of care will be. Keep language simple and focused on what the child may observe as a result. 

Children need to know what to expect and where to expect it, what kinds of treatment, medication and even side effects are expected. For example; after a treatment, I won’t be able to get out of bed by myself for a few days, or, the medication might make me sleepy.

Tell your child who will be looking after them, where they will be cared for, and what will change in their day-to-day routines.

 Review this essential information with them on a regular basis, especially if your condition is changing.

Reassure your child that you will talk to them regularly about what is happening and how you are doing. 

Encourage your child to ask questions of you or any other trusted person at any time.

Your health care team will be naturally aware and inclusive of children involved in

your situation. Take advantage of their knowledge and expertise.

Talking to your Physician

Make an appointment with your Family Physician if you have been diagnosed as Palliative by a specialist, as it is likely your Family Physician will be coordinating your palliative care.

In order to communicate best with your doctor around this issue, remember to tell the medical office assistant that the appointment concerns your palliative care, and book a longer appointment.
You deserve time and care over these issues and the doctor needs to know this is the objective of your appointment. 

It may be worth taking a family member or friend with you. This time can be difficult for your doctor as well, especially if they have known you for a long time. 

Accessing Palliative Care 

If you live on Vancouver's North Shore, your physician will explain how the North Shore Palliative & Supportive Care Program operates, and make your referral. When your doctor refers you to the program, make sure you also have a referral to the provincial Palliative Benefits Program so that your medications and if necessary, some equipment costs, are covered.

Performing this critical step gives you access to a highly skilled team which, along with your Family Doctor, will be 100% focused on ensuring you are kept as comfortable as possible. It relieves you and those around you from having to think about the care you need.

Should you wish, you can also ask your physician to refer you to a family physician who specializes in palliative care. 

If you do not live on the North Shore, but are in the Vancouver Coastal Health area, contact your local health unit. In addition you can contact either the British Columbia Hospice/Palliative Care Association (BCHPCA) or the Canadian Hospice/Palliative Care Association (CHPCA), you will find your nearest palliative care assistance.

What is the North Shore Palliative Care Program?

Should you, your friend, or a family member become part of the Palliative Care Program, your physician would continue to direct your care - supported by an interdisciplinary team of caregivers who supplement the care given by family and friends.

The immediate palliative care team is comprised of your family physician or a family physician specializing in palliative care, hospital and community palliative care doctors and nurses and a social worker.

The larger team includes a medical director, a clinical resource nurse, a pharmacist, a dietitian, a physiotherapist, an occupational therapist, a music therapist, a chaplain, a volunteer coordinator, volunteers and a bereavement coordinator.

Palliative Care is delivered wherever you are; in the hospital on a ward or in the Palliative Care Unit, in your home, in a long-term care facility or hospice. The care focuses on patient comfort, including pain and symptom control, family support and quality of life. Any of the team may be involved in your care depending on your needs.

As your illness progresses, care will be provided more intensively regardless of location. Home care nurses and social workers in particular will increase the frequency of their visits to ensure you are comfortable and that your care giving family and friends are given the breaks and support they need. [link to the NS pc program site].

Home Medication Kit

Included in the BC palliative care program, free of charge, is a standardized home medication kit used province wide. When you are within a few weeks of dying, your doctor may order one to assist your family and nurse with medications should there be changes required at the weekend or overnight. It can save you and your family time, energy and worry. It does not replace your regular medications. The nurse will be in charge of managing its contents. If changes are required, they can be sorted out during regular hours between your doctor and home care nurse.

Home Care Equipment

If you wish to stay at home, equipment such as a wheel chair, temporary railings, hospital bed or commode may be required. The home care nurses will make this assessment and ensure it is provided when needed.

Can I Die at Home?

Where you die depends on your wishes but also on your illness.

For many reasons, patients are comfortable in their own home with family and friends at hand in a familiar environment. The North Shore Palliative & Supportive Care Program and provincial Palliative Care Benefits Program will support your home care; that is a nurse, doctor, medication and equipment to be available at home. This can continue until death occurs.

When you need stabilizing treatment or your caregiver or you require a break from the home (respite care), your palliative care team will arrange for you to be admitted temporarily to a hospital or hospice for a few days after which, depending on your circumstances, you may return home.

There are many medical and social circumstances where it is not always possible to die at home. You may live alone. If you have caregivers at home, the burden on them may be too great. Your medical situation may simply be too complex. Your team will help facilitate a

What is Hospice Care?

The term 'hospice' has been around since medieval times. A hospice was once a place where weary travelers sought refuge, comfort and sustenance.

The modern concept of hospice was pioneered by Dame Cecily Saunders who opened a hospice in England in 1967. In North America, hospice care programs have generally been developed in hospitals and have been called palliative care programs. The expressions hospice care, palliative care and end of life care are now synonymous.

A team of health care professionals, specially trained volunteers, friends and family members provides hospice, palliative, or end of life care. It includes medical, physical, emotional, and spiritual support until death, and support for the bereaved after the death. This care is focused on patient comfort and quality of life and is offered in North Shore homes, our hospital, hospice and care facilities.

Today's Hospice

Hospice is both a kind of care, and a physical place. The North Shore Hospice,  built in 2010 provides compassionate care in a home-like setting to people whose illness has progressed beyond the scope of traditional medical treatment aimed at curing disease or prolonging life. This end of life care is available to all in their last months and weeks of life, focusing on patient comfort, family dialogue and support, and saying goodbye. Admission to the hospice will be facilitated through your family doctor and/or your palliative care team.

The video at this link provides a caregiver’s perspective on the value of a hospice in providing quality palliative care. 

What are the legal issues I need to deal with?

There are several legal issues with which you should deal now to avoid creating stress later.

Dealing with them in advance ensures they will be dealt with in a calm, organized way rather than in an atmosphere of stress and distraction.

• Do not resuscitate (No CPR or DNR) order
  
• Notification of Expected Death
  
• Health Care Directives
  
• Wills and Related Legal Terms
  
• Planning a Funeral
  

What are the legal issues family and friends need to deal with?

Who to Notify about a Death Family and friends soon hear of the death of someone close to them, but other people should also be notified as soon as possible. These people include: the deceased’s employer, insurance companies if there are any claims to be made, doctors, spiritual advisers, if relevant, any organizations or clubs where the deceased person was a member, Veterans Affairs Canada or provincial social services departments if these agencies are involved in covering funeral expenses.

Obtaining a Death Certificate Governments, banks, and lawyers will require a death certificate in order to process benefits or deal with assets. If you are dealing with a funeral home, they will generally order as many death certificates as you request. The cost of these certificates varies across the country. In order to obtain a death certificate, you will need the following information about the deceased person:

• Full name
  
• Usual home address and telephone number prior to death
  
• Date of birth
  
• Date of death
  
• Social insurance number
  
• Place of death
  
• Marital Status
  
• Father’s name and birthplace
  
• Mother’s (maiden) name and birthplace
  

You will also need to state your relationship to the person named on the certificate. The certificate does not state the cause of death.

Canada Pension Plan Disability Benefit

The Canada Pension Plan (CPP) is a national public insurance program that provides income protection to Canadian workers upon retirement. The CPP also has a disability component that provides benefits to contributors who cannot work because of a disability. Working Canadians are covered under the disability plan regardless of their medical history. In order to be eligible for the disability benefit, workers must have paid into the CPP for a specified time period and have a disability that is both severe and prolonged. “Severe” means your condition prevents you from working regularly at any job, and "prolonged" means your condition is long term or may result in your death.

If you have children and are receiving a disability benefit, your children may be eligible for the CPP children’s benefit. To find out more about the CPP disability benefit, see:

http://www.sdc.gc.ca/asp/gateway.asp?hr=en/isp/pub/cpp/disability/benefi... at Social Development Canada.

Provincial Palliative Care Benefit Programs

The BC Palliative Care Benefits Program is covered elsewhere on this site.

http://www.healthservices.gov.bc.ca/cpa/publications/palliative_benefits...

Provincial Social Assistance

People who are not eligible to receive a disability benefit from the CPP may turn to social assistance, often referred to as “welfare.” The province generally requires that the applicant’s disability be long term and severe enough to prevent the person from working. In addition, the applicant must also complete a needs test to determine the person’s total income and whether they qualify for the benefit.

Employment Insurance Sickness Benefits

Employment Insurance is a federal program that offers income protection from temporary work absences, including reasons related to illness and temporary disability. If the work absence is going to be over a prolonged period of time, employment insurance will not provide benefits. People who expect to be unemployed over a longer period would receive benefits under the CPP and social assistance programs.

Like the CPP, Employment Insurance is administered by Social Development Canada.

Insurance Plans

Some employers provide group insurance packages to their employees as a workrelated benefit. These packages may cover such things as prescription drugs, medical expenses, and dental expenses. Group insurance may also provide survivors with an income in the event of the employee’s disability or death. You will need to check with your employer or the insurance company providing the group insurance to understand the details of your particular coverage, and how long the insurance will continue in the event that illness forces you to stop working.

People who work for companies that do not offer group insurance plans or who are self-employed can buy disability coverage through a private insurer, above and beyond the CPP disability benefit.

Life insurance, either provided through a group plan at work or an individual policy that you may have purchased, will often provide for what is known as a “living benefit.” Such a benefit allows for people who have been diagnosed with a terminal illness to have a portion of their anticipated benefit paid to them in the years preceding their death. Taking such benefits will reduce the amount of the insurance benefit ultimately paid to the beneficiary of the insurance and any such decision likely should be discussed with a financial advisor.

Tax Credits

People who have costs related to health-related goods and services or additional living costs due disability may be eligible for tax credits. To find out more about tax credits that may be available to you, consult with a financial adviser.