End of Life
The Ministry of Health considers high quality end-of-life care services to be a critical part of health care services.
Nearly 56 per cent of people who die in B.C. spend their final hours in a hospital, despite the fact that nearly 90 per cent of Canadians report they would like to stay at home during their remaining time. With good planning and appropriate services, the province believes many more people will be able to spend this time, with the support of family and friends, in the comfort of their own homes or specially designed hospices (including residential care facilities).
As only 10 per cent of all deaths each year in B.C. are unexpected – 75 per cent of deaths are among seniors – advance planning is vital to a well-managed health care system. And, as the ability to manage chronic diseases such as heart disease, stroke, respiratory disease and cancer improves, more British Columbians will live longer and need support at the end of their life.
By 2026, one in five British Columbians will be a senior. With an aging population, comes the need for end-of-life care planning.
B.C.’s Framework for End-of-Life Care
To improve the quality of end-of-life care, in 2001 the Ministry of Health engaged a panel of experts to examine how home and community care services can better serve palliative care clients. The ministry also consulted with people across B.C., family caregivers, palliative care professionals and volunteers providing hospice and other support services. Their feedback formed the basis of a broadly-circulated discussion paper.
Using further research-based evidence from B.C. and other provinces, the ministry has developed the policy document, A Provincial Framework for End-of-Life Care. This framework is a guide for health authorities, service providers, communities and individuals in developing and delivering services for people who are dying and their families.
- Discussion paper on end-of-life care:
- Provincial policy framework:
Services
Whether a senior or young person with a serious illness, most people nearing the end of their life want to have as enjoyable a quality of life as possible in their circumstances.
End-of-life care is supportive and compassionate care provided during the remaining days, weeks or months of a client’s life. It is provided wherever the client is living -- in their home, in hospital, a hospice, residential care facility or an assisted living residence.
Specialized care services preserve the person’s comfort, dignity and quality of life.
Palliative Care
Palliative care services relieve, eliminate and/or control symptoms so those facing death, and their loved ones, can devote their energies to embracing the time they have together.
Community-based Care
Community services include palliative care co-ordination and consultation, professional nursing services, community rehabilitation services, home support and respite for the caregiver.
BC Palliative Care Benefits Program
The BC PalliativeCare Benefits Program supports individuals of any age who have reached the last six months of a life-threatening disease or illness and want to receive palliative care at home.
Eligible patients receive:
B.C. residents who are enrolled in the Medical Services Plan can request that their physician assess their medical eligibility for the program and submit an application on their behalf.
Joint Protocol For Expected/Planned Home Deaths in British Columbia
Many Canadians want to die at home. British Columbia uses a planning document called the Joint Protocol for the Management of Planned Home Deaths to support individuals in this choice.The Protocol provides guidance to individuals at the end of their lives, families, and health care providers about how to manage anticipated natural home deaths.
In 2007, the revised document, Joint Protocol For Expected/Planned Home Deaths in British Columbia, brings greater clarity to roles, responsibilities, and activities involved in a home death. Major changes to this document include:
- references to a No Cardiopulmonary Resuscitation (CPR) Order rather than a Do Not Resuscitate (DNR) Order reflecting the current, more precise terminology used on the Ministry of Health form used to document individual’s wishes and physician orders indicating resuscitation should not be attempted when breathing and heart beat stop.
- clarification that BC law does not require death to be pronounced and the addition of a process for the family to choose to waive pronouncement of death. While it is widely recognized that it is sound clinical and ethical practice for nurses and physicians to be available to pronounce death, there are circumstances in which pronouncement may be difficult and delays create undue stress for the family. In such cases, BC funeral directors require assurance that death was expected before they will remove the body. A new form called Notification of Expected Death in the Home, completed by the physician and forwarded to the funeral home before the death, provides this assurance and allows for removal of the body.
- clarification that physicians should plan to pronounce death at home if he/she has concerns regarding the potential manner of anticipated death and involve the coroner if appropriate.
- clarification that the Cremation, Interment and Funeral Services Act requires funeral homes to receive authorization to remove human remains and that they receive this authorization from the correct individual. Although the body may be removed from the home without pronouncement of death or a Medical Certification of Death, funeral homes require a Medical Certification of Death to proceed with burial or cremation.
The Protocol is the result of collaborative efforts of the Ministry of Health, health authorities, BC Ambulance Services, the Office of the Chief Coroner, BC Medical Association, BC College of Physicians and Surgeons, BC Hospice/Palliative Care Association, College of Registered Nurses of BC, Funeral Service Association of BC, RCMP “E” Division, (former) BC Health Association, BC Care Providers Association, and BC Municipal Police Chiefs Association.
QUESTIONS AND ANSWERS
FOR THE PUBLIC
1. What is the Joint Protocol For Planned/Expected Home Deaths? Why is it needed?
The Joint Protocol explains how to plan for a patient with life-limiting illness to remain at home until death. It is called joint because a number of groups -- the BC Medical Association, the College of Registered Nurses of BC, BC Ambulance Services, the Funeral Service Association of BC, and others -- worked with the Ministry of Health to develop these instructions. All of these groups need to be involved in order to make things go smoothly for people who plan to die at home. Without planning and completing the forms described in the Protocol, it is difficult for public employees such as ambulance attendants to determine what deaths are planned and respond appropriately.
2. I or my loved one would like to die at home. Are there any guides that could help my family with these difficult discussions?
Many people are uncomfortable talking about death and dying and there are numerous resources that may assist you. Check your public library, the library of your local hospice organization, or your local bookstore for books on this subject. You may also want to speak to staff and volunteers of your local hospice organization, your physician, home care nurse, or your spiritual advisor. For factual information about end-of-life planning, consult the BC Health Guide on-line at: http://www.bchealthguide.org/ and search for end of life.
3. Who can help with the plan?
Your local home care nurse and your family physician are often the best people to assist you with this plan; local hospice groups and palliative care programs may also be helpful to you.
4. What is meant by No Cardiopulmonary Resuscitation? Why do we need a form for this?
Cardiopulmonary Resuscitation (CPR) is an emergency procedure used when a person stops breathing or the heart stops beating or both. CPR tries to get the person to begin breathing or to start his or her heart beating again.
A No CPR order is a doctor’s instruction that no one should try to revive you if you stop breathing or your heart stops. If you have decided that you would not want CPR, you should tell your doctor or nurse. No CPR orders are more common now as people understand that they have the right to die peacefully if they want to.
In B.C., ambulance attendants must see a doctor’s order for No CPR; without this document, they are required to attempt resuscitation. If you do not wish to have CPR, you should make sure your doctor has signed a No CPR form. You can also get a Medicalert bracelet with a No CPR Order engraved on it (ask your doctor for more information about this).
5. What should we do if we have signed the No Cardiopulmonary Resuscitation form and call 911 at the time of death, just because we panic?
You can call the 911 dispatch and ask them to cancel the call. However, it may be too late to contact the ambulance and fire departments who will be dispatched. If they arrive, show them the No Cardiopulmonary Resuscitation Order and explain your situation. Ask them to help you contact a family member or friend to be with you to help you make the necessary arrangements.
6. What is the Notification of Expected Death in the Home Form?This is a new form to be completed by a physician following discussion with the patient and/or family. It allows the physician to notify a funeral home that someone’s death is anticipated and, that after death has occurred, the funeral home may remove your loved one’s body with the consent of the person authorized to make decisions (this may be a family member, friend etc.). If this notification form is completed, you and the funeral home do not need to wait for a physician or nurse to come to the home to pronounce the death. It is also important to consult the funeral home as to whether they can arrange for removal of the body on a 24 hr basis and how they can be contacted outside of regular hours.
7. What is pronouncement of death? How will I know my loved one has really died?
Pronouncement of death is the act of observing that someone has died. It is not legally required that a physician or a nurse make this declaration; a family member can do so by watching the person’s breathing and noting when the breathing has stopped. Usually the breathing pattern gradually changes until the person is breathing very slowly and then not at all. You need to wait one hour after the breathing has stopped before calling the funeral home to remove the body.
8. What if I sign the Notification of Expected Death in the Home form and then change my mind?
You may change your mind at any time before or after the death has occurred. If you do, you should contact a physician or a nurse to request a home visit to pronounce the death. There may be a wait especially if this happens during the night.
9. If a home support worker is alone at home at the time of death and a Notification of Expected Death in the Home form has been completed, can the home support worker call the funeral home to remove the body?
No. In such a circumstance, the home support worker should remain with the body until the family or designate arrives; only the family or designate has the authority to call the funeral home to request removal of the body.
10. What is a Medical Certification of Death? What is a death certificate?
The Medical Certification of Death is a form completed by your physician (the same one who completes the Notification of Expected Death in the Home) that indicates that the person has died and the cause of death. The funeral home must have this Medical Certification of Death prior to burial or cremation. The medical certificate of death and other information about the person who has died is provided to the BC Vital Statistics Agency (www.vs.gov.bc.ca) which will then issue a death certificate. The death certificate is the official registration of the death and contains the individual’s full name, gender, date of death, place of death, place of birth, resident province, state or country, registration number, and date of registration; it does not have the cause of death. The death certificate will be necessary in settling the legal and business affairs of the deceased.
Some B.C. Examples
- Victoria Hospice Society, the first integrated palliative care program in B.C., has provided end-of-life care to patients and their families since 1980. Their services include expert physical care, as well as counselling, spiritual care and bereavement services. A palliative response team on South Vancouver Island supports clients in their homes. After-hours medical support is provided to palliative units and through home care nurses in Nanaimo and Victoria.
- Richmond’s first community-based hospice, the Salvation Army Rotary Hospice House, provides home-like care during the final stages of a client’s life. The project is an innovative partnership with Vancouver Coastal Health, which covers a portion of the annual operating costs. The hospice is also funded through the assistance of donations from the Rotary Club of Richmond, community groups and individuals. Capital funding is provided by Canada Mortgage and Housing Corporation and BC Housing, under the Canada-BC Affordable Housing Agreement.
“Hospice care is about providing a commitment to the whole person – the physical, emotional, social and spiritual – and helping individuals who are dying to face their death with personal integrity and truly living until they die.” – Honourable Linda Reid, Minister of State for Childcare and MLA for Richmond East
- An after-hours response pilot project, in partnership with BC NurseLine, provides advice and support to Fraser Health hospice palliative care clients and their families when regular health offices are closed. A new 11-bed tertiary palliative care unit at Burnaby Hospital acts as a regional referral centre for the health region. In addition, community-based hospices are located in Burnaby, Port Moody, Surrey, New Westminster and Mission.
- Interior Health’s regional palliative care strategy has led to enhanced services and new hospice beds in the Okanagan, including Vernon and Penticton, and in Kamloops, located in the Thompson Cariboo Shuswap region.
- Northern Health is working towards a palliative care network of services. The network will be a model of excellence for palliative and end-of-life care within rural and northern communities.
- The Victoria Conservatory of Music music therapy program uses singing, instrument playing, composing, active listening and movement-to-music activities to support children, youth and adults coping with life-threatening illnesses or grieving the loss of a loved one. Music therapy can:
- assist with pain management;
- lessen anxiety, agitation and insomnia;
- reduce depression and loneliness;
- facilitate emotional expression;
- encourage life review and reminiscence;
- provide spiritual support; and
- ease family tensions and decrease caregiver stress.
Useful Links Care
Services and Support for Palliative Care Clients, Family Members and Friends
- BC HealthGuide Program: - Provides reliable, confidential health information and advice you can trust, including:
- BC HealthGuide Handbook 2005 English edition is available free of charge at local pharmacies and government access centres. This revised version contains new information on healthy aging, including tips for caregivers.
- BC HealthGuide OnLine
- BC HealthFiles: Available at www.bchealthguide.org or through local public health units or departments.
- BC NurseLine: Provides 24-hour-a-day confidential health information and advice on a variety of topics, including caring for people nearing the end of life.
Call toll-free in B.C.: 1 866 215-4700
In Greater Vancouver: 604 215-4700
Deaf and hearing-impaired: 1 866 889-4700
- Hospital, hospice and home-based palliative care programs: Visit this link to locate palliative care resources by health authority.
- British Columbia Hospice Palliative Care Association: Leadership for organizations and individuals to ensure quality of care for British Columbians faced with a life-threatening illness, death or bereavement.
- Victoria Hospice Society: Physical, emotional and spiritual care and bereavement services for Victoria patients and their families.
Planning for the End of Life
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