Understanding Palliative Care & Hospice: In the Community and In-Facility
Please note the extensive resources throughout the blog article.
All of hospice care is palliative care… but not all palliative care is hospice. Hospice is the last stage of palliative care for the end of life.
Adults who most often need palliative care and hospice are those with:
Advanced dementia (most often in long-term care).
End-stage cancer of all kinds.
Advanced neurological diseases such as Parkinson’s Disease and all its subtypes, ALS, and Huntington’s Disease.
End-stage pulmonary and cardiac diseases.
Progressive liver or kidney failure.
Complications of diabetes such as peripheral vascular disease.
There is an increasing need for palliative and hospice care due to:
The Baby Boomer Generation (those between 1944 and 1964) is the biggest bulge in the history of the world, and now they are retiring and aging.
In 2030, the number of people turning 75 years old will increase by 43 percent across Canada and as much as 64 percent in some areas of BC. This population of seniors will outnumber all other ages combined.
With increased age comes a very high need for end-of-life support.
Palliative care and hospice care take special knowledge and skills.
Community services can’t keep up with the demand for palliative and hospice care services.
Public home care services generally are a maximum of 2 to 4 hours per day, leaving the rest to family caregivers, where the burden can be massive.
Families are turning in ever-increasing numbers to private home care for specialized palliative and hospice care.
Definitions
Palliative care
Palliative care focuses on providing relief from the symptoms and stress of living with a serious, life-threatening or life-ending diagnosis with the goal of improving the patient's quality of life for the time that is left. It is ongoing until the end of life.
Due to the connotation that the word ‘palliative’ means end-of-life, some healthcare agencies, such as the BC Cancer Agency, are calling palliative care, “Pain and Symptom Control” and others are calling it “Supportive Care.”
Palliative care, and the medical subspecialty, palliative medicine, is specialized medical care for people living with any serious illness.
The healthcare system has made an arbitrary designation of palliative care generally being the last six months of life – which further stigmatizes the word and prevents many adults from getting the care they need.
In reality, a person can need to receive pain and symptom control or supportive care for years.
Hospice
Hospice is end-of-life care at home or in a hospice facility and is restricted to comfort care and symptom management. In-facility care is generally restricted to the last three months of life.
Public Palliative Care at Home and in the Community
BC Palliative Care Benefits Program
The BC palliative care benefits are available to any BC adult who has reached the end stage of their life and wants to receive care where they are living (this can include residential care).
Eligible patients receive:
Coverage of medications used in palliative care through the PharmaCare BC Palliative Care Drug Plan (Plan P), and
Medical supplies and equipment through the local health authority
Forms and guides
Public palliative and hospice home care referrals
Anyone can make a referral – it does not have to be made by a healthcare professional. Call your local community health unit and ask for “intake” (you will need the adult’s full name, date of birth, and Personal Health Number). This is not a fast process. If the adult needs immediate support and care, take them to the hospital.
If you or your loved one is in hospital and are going to go home with palliative care home care services, the person who arranges home support differs from hospital to hospital and unit to unit. Often, it is the social worker, a community liaison, or an occupational therapist. They can start the process, and it will be handed over to a community case manager. See Who is Who in the Hospital Zoo and Hospital Discharge Planning.
An assessment will be done, and you will be assigned a case manager. Your case manager will help you apply for Palliative Support and Benefits.
Palliative and hospice home care services include:
Non-medical caregiving (restricted to bathing, dressing, transferring, and warming pre-pared meals) – usually two to three times per day for a total maximum of four times per day;
Nursing care (only when medical criteria are met) is often limited to 1 to 2 visits per week;
Nurse practitioner;
Physician oversight (when there isn’t a primary care practitioner or they cannot be actively involved);
Occupational therapy (for equipment);
24-hour care for the last three days of life (note: this is rarely happening now due to serious staffing shortages).
Private-Pay Palliative and Hospice Home Care
Not only do a lot of people want to live their last days in their own homes and die in their own beds, but the healthcare system is also currently demanding that we do so even if we don’t want to due to the lack of hospital and hospice beds. Public home care rarely provides enough care – and certainly not all the services that are needed. As a result, families are turning to private home care to fill the massive gaps. There are some big pros and some massive cons to this alternative.
What to Consider If You Want to Die at Home
Due to the current and foreseeable extreme caregiver shortages, do not rely on community health services. If you live alone and don’t have adequate supports, or you can’t afford private home care services, dying at home may not be a viable or safe option. Assertively speak to your case manager or hospital social worker.
Do you have support from friends and family? Your need for assistance will become intense in the last days of life. Will this be a burden for them (emotionally, physically and financially)?
Will your home be able to accommodate a hospital bed, a portable sling-lift, a commode, and will a wheelchair fit through doorways and into rooms?
Pros:
Caregivers can do all physical care, light housekeeping, meal preparation, shopping, and errands.
They can be hired for 4 hours to 24 hours per day – and you can increase care as it is required.
Caregivers coming into the home are often much more consistent. They get to know the home and the patient.
Cons:
It is expensive! Plan ahead to liquidate assets. Depending on the city, rates are $35 to $70 per hour. Even 4 hours per day at an average rate of $45 per hour can cost more than $5,000 per month, and 24/7 care can cost more than $20,000 per month. Have vital discussions with your loved ones regarding cost – before home care is needed.
Not all care agencies are equal. Do your homework and ensure that they have trained palliative and hospice-trained caregivers and case manager oversight!
Palliative Care in Hospital
In-hospital palliative care is for those who have a life-ending diagnosis and who need medical and nursing support for pain and symptom management and control. Unlike in-facility hospice, advanced treatments such as intravenous (IV) fluids, blood products, antibiotics, palliative chemotherapy and radiation, and dialysis may continue to be offered.
Patients may be admitted to palliative care for their symptoms to be stabilized and then be able to return home. Some will be stabilized and then transferred to hospice. Some will not be stabilized, or they remain too ill to go home or to hospice, and they will die while in palliative care.
In-Facility Hospice
If admitted to hospice, all active treatment for the management of the disease will be discontinued, although pain and symptom management will be maintained. The patient will be assigned to the level of care: Comfort Care Only, and resuscitation will not be provided. Except in the most exceptional circumstances where pain and symptom control can’t be managed, transfer back to palliative care or hospital will not occur.
Generally, admission to hospice can occur quite quickly (within a day or two) when the patient is no longer able to manage at home.
It is important to do your homework ahead of time to pick a hospice or two that suit your preferences and needs (such as proximity to loved ones).
At present, due to lack of beds, there is an arbitrary time-limit for care in hospice and only those who are deemed likely to die within 3 months are eligible for admission. If a patient should survive past 3 months, they will be discharged home or to residential care.
If you are considering MAiD, use caution in the facility you choose, as some will not offer it on-site and you will need to be transferred to another hospice or hospital. See, Understanding MAiD.
Hospices are usually separate facilities to the hospital – but are often nearby. They are generally not-for-profit organizations and some are supported or run by religious organizations. The cost of hospice in BC at time of writing was $43.98 per day – or more than $1,300 per month.
Advance Care Planning for Serious Illness and End-of-Life
Ultimately, Advance Care Planning (ACP) was developed for exactly this time of life. It is vital that if you have not thought about your values and beliefs or put your documents together, you do it now.
Conversations with your loved ones will help ensure your preferences for care will be honored. Documentation will allow them to legally speak on your behalf when you need assistance or you are no longer capable of speaking for yourself regarding your healthcare, personal planning, and financial and legal planning.
If you have not already done so, you are encouraged to read Understanding Advance Care Planning.
Vital Advance Care Planning documents for End-of-Life
Enduring Power of Attorney (financial & legal authority)
Representation Agreement (health & personal authority)
Advance Directive (legally binding healthcare wishes)
No CPR order (also known as DNR or Do Not Resuscitate)
For palliative and hospice patients:
MOST or Options for Care (clinician resuscitation orders)
Expected Death in the Home (EDitH) form
Any instructions for care of the body after death
Funeral Home information
Put your ACP documents where they can be found.
It is recommended that copies of all Advance Care Planning documents go in a folder on or beside the fridge! This is the universally known location for these documents that first responders and Paramedics will look to.
Advance Care Planning Documents for End-of-Life
Enduring Power of Attorney
This is a ‘financial and legal affairs document’ only. It does not allow the person to make health care decisions unless they are also assigned as the health Representative. (This is the most common misconception in advance care planning.)
It allows the EPOA to assist with finances when the adult is still capable and to take over the finances when the adult is incapable.
This is a private document, and a copy of it should not be with ACP documents, but let your EPOA know where it can be found.
The EPOA may be the person assigned to pay home care, hospice or long-term care fees.
The community health case manager will need the EPOA to provide the CRA Notice of Assessment to calculate subsidized home care rates.
Representation Agreement
BC is the only province that has a specific document allowing you to name the person you want to speak for you when you are no longer able to speak for yourself.
Naming a Representative is massively important for adults who are seriously or critically ill and approaching end-of-life as there is a high probability that they will become incapable. Examples: being on life-support and/or in a coma; large doses of opioids; advanced cognitive impairment such as from brain cancer or dementia.
See:
Who Will Speak for You: Substitute Decision Makers
Who Will Speak for You: Representation Agreements.
Advance Directive, Living Will or Letter of Wishes for Medical Care
An Advance Directive is a written, legally enforceable document stating the adult’s values, beliefs and preferences for health care.
Living Wills or Letters of Wishes for Medical Care are non-legally enforceable documents that will provide guidance to your loved ones and healthcare team.
No CPR (No Cardiopulmonary resuscitation) form
No CPR is the same as DNR (Do Not Resuscitate). While DNR is a commonly used term it is not the legal term in BC.
This is a signed and legal medical document in BC when signed by the adult and a doctor or nurse practitioner. It is meant for the home and in the community.
This should be completed for all palliative and hospice patients.
It needs to be readily available for all first responders and Paramedics.
Form: No CPR (No Cardiopulmonary resuscitation)
Medical Orders for Scope of Treatment (MOST) = Level of Resuscitation
These are physician-signed orders that are to be discussed with you for the most appropriate level of treatment and resuscitation.
The form should be put in place for all adults who have a life-threatening or life-ending illness. Too often, they are not discussed until a health crisis.
They are called MOST in all BC health authorities except Providence Health Care, where they are called ‘Code Status (Options for Care)’: St. Paul’s, Mt. St. Joseph’s, Holy Family, and several long-term care facilities and hospices.
In order to qualify for Palliative Care, patients must agree to a level of “No CPR” and likely will not be transferred to a hospital, but they still might receive antibiotics and other treatments to control their symptoms.
Hospice patients will always be “No CPR” and antibiotics and other treatments will likely be stopped. They will be provided with ‘Comfort Care’ only. See more in Chapter 7.7, Understanding Medical Orders for Scope of Treatment (MOST).
Expected Death in the Home form
This is a signed medical form that should be completed for any person who might or wants to die at home.
When this form is present, and the adult dies, paramedics, police, and the coroner will not be called. The funeral home can be called directly.
It needs to be reviewed and renewed every three months.
Getting to the end of life and dying on your own terms takes education, planning, assertiveness, and a strong support team. But it’s worth it. It will increase the likelihood that you will have the death you want, honouring your life-long values and beliefs.
Resources
Canadian Virtual Hospice: Information and support on advance illness, palliative care and grief.
Hospice Societies
(List from the BC Hospice and Palliative Care Association)
Visit the website of your area hospice society for further education, support, and services.
Fraser Region Members
Heron Hospice Society of Delta
Interior Region Members
100 Mile District Hospice Palliative Care Society
Ashcroft District Hospice Program
Central Okanagan Hospice Association
Clearwater and District Hospice Society
Cranbrook Kimberley Hospice Society
Creston Valley Hospice Society
Hospice Society of North Kootenay Lake
Hospice Society of the Columbia Valley
Merritt & District Hospice Society
North Okanagan Hospice Society
Penticton & District Hospice Society
Northern Region Members
Bulkley Valley Hospice Society
Fort St. John and District Palliative Care Society
Prince George Hospice Palliative Care Society
Prince Rupert and District Hospice Society
Quesnel and District Hospice Palliative Care Association
South Peace Hospice Palliative Care Society
Provincial Region Members
Canuck Place Children’s Hospice
Vancouver Coastal Region Members
Sunshine Coast Hospice Society
The Bloom Group – Mays Place Hospice & St. James Cottage Hospice
The Salvation Army Rotary Hospice House
Island Health (VIHA) Members
Alberni Valley Hospice Society
Campbell River Hospice Society
Cowichan Valley Hospice Society
Nanaimo Community Hospice Society
North Island Crisis & Counselling Centre Society
Salt Spring Hospice and Bessie Dane Foundation
Health Authorities
Fraser Health
Palliative Care: Services can be provided at home, in hospital, at a long-term care facility or in hospice. It can include grief and bereavement counselling, equipment and supplies in the home, and access to a hospice or a palliative complex care unit. Support is extended to family members.
Hospice: Referral and location
Interior Health
Palliative and End of Life: (the best website I’ve seen)
Caregiving for people with an advancing illness
choosing supportive & palliative care options
Medical Assistance in Dying
Palliative Care Overview
The Final Days
The moments after a death.
Hospice Locations
Island Health (VIHA)
End-of-Life, Hospice & Palliative Services
Bereavement group for MAiD
Care at Home During End of Life
Care in Hospice, Hospital or Facility
Home Support Services
Hospice Palliative & End-of-Life Care
Virtual Palliative Supportive Care
Northern Health
Information for patients and families
Palliative care services and resources
Vancouver Coastal Health
Palliative care / Hospice Care / End of life care
