The term ‘palliative care’ stirs up different images and thoughts and feelings in people’s minds. Within the healthcare field, the meaning of palliative care has changed over time. Read on to learn more about key questions and answers about palliative care today.
1. What is palliative care?
Palliative care is really about an approach to care for individuals and families who are living with life-limiting or life-threatening condition. What is this approach? The approach is to:
- Help improve your quality of life
- Reduce or relieve your physical and psychological symptoms
- Help you have a peaceful and dignified death
- Support your family and caregivers
In line with this approach, treatment focuses on pain and symptom management, and providing support (emotional, psychological, spiritual and social) to the person with the illness or disease and their family/caregivers.
At its most ideal, or at its best, palliative care is provided as soon as a person receives a diagnosis of a life-threatening illness or disease.
2. Is there a difference between palliative care, hospice care and hospice palliative care?
The language used by health care professionals changes and can lead to some confusion. There really is no difference between these three terms. At the same time, many people in the field refer to care provided in the community as hospice care. These days, the term ‘hospice palliative care’ is becoming more common as a descriptor, regardless of where it is received.
3. Where do people receive ‘hospice palliative care’?
- In the home
- Long-term care facilities (LTC)
Most Canadians would prefer to die at home. Despite this preference, the majority of Canadians die in hospital. Further, a 2018 study shows that more than 80 % receiving palliative care in hospital were admitted through the emergency department. Again, while the approach to hospice palliative care is defined by early involvement (when first diagnosed with a life-threatening condition), it is NOT being accessed early or in a systematic way in Canada.
There are many reasons for this gap between preference and what is currently the reality for Canadians. The biggest factor has been flagged as the inadequacy of home care and other forms of support for family caregivers caring for a dying person. If ever there was a place for advocacy….
4. Who pays for hospice palliative care?
For the most part, care is provided by a palliative care team and the costs of this care are covered under your provincial or territorial health care plan. There are some differences as it relates to how much coverage.
Care is usually covered by your provincial or territorial health care plan. There may be additional costs not covered by the provincial plan, such as equipment brought into the home (like a hospital bed, for example) and the cost of some medications.
In addition, there are usually restrictions on the number of hours of care provided for hospice palliative care in the home. Individuals and families sometimes have private health insurance, workplace benefits/coverage or they pay for additional hours of care out of their own pocket.
There may also be some assistance (typically for medical equipment) available from service clubs (such as the Rotary Club or Kiwanis Club) and specific disease organizations (for example, the A.L.S. Society, Cancer Society).
The costs of care are usually covered by provincial or territorial health care plans. This would include the care itself as well as medications and necessary hospital equipment. Some hospitals have special palliative care units and others have designated beds for people who need palliative care.
Long-term care facilities (nursing homes)
While residents of long-term care homes may pay a co-payment, this payment is for food and accommodations – not palliative care services. The palliative care services, when available, are covered by the provincial or territorial health care plan. Not all long-term care homes are able to provide palliative care when needed and the resident may have to go to hospital.
These are home-like settings in buildings, where people receive 24- hour palliative care. There are very few in Canada. As of 2018, there were 88 residential hospices. Most hospices require patients to have a life expectancy of 3 months or less to be admitted. Again, the costs of care are usually covered by provincial or territorial health care plans.
5. What is a common misconception about palliative care?
One common misconception is that a person cannot be taking treatments to slow the progress of the illness or disease while receiving palliative care. In fact, palliative care can lead to a better quality of life. It might strike you as weird to use quality of life and life-threatening condition in the same sentence. However, imagine if your symptoms and pain are being managed; your social, psychological and spiritual wellbeing is also being cared for; and your family and caregivers are also being supported. All of this care can lead to an improved quality of life.
What do you think of when you hear the words ‘palliative care’? In my experience, most people tend to think immediately of dying and imminent death. This is understandable because most palliative care services continue to be received in the last month of life. We have quite a long way to go with resources, education and training to make this new approach to palliative care a reality for Canadians.
Does anything about hospice palliative care surprise you?