Palliative care is a highly charged term. For many people, when they hear it, they immediately think of end-of-life. However, palliative care is about quality of life – not end-of-life.
For caregivers, palliative care is about providing the best quality of life and comfort for those who have been diagnosed with a serious illness.
In fact, the World Health Organization (WHO) definition of palliative care is listed as, “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
When a friend’s nurse talked to her about palliative care following a diagnosis, it scared her out of her mind. My friend stated, “I felt like she just raked me over the death coals.”
Debunking palliative care myths
A lot of myth-busting is needed about palliative care.
By choice, more and more people are now staying at home as they age and receiving increasingly complex and varied medical treatments. A holistic approach to palliative care is important. It’s not about giving up hope – in fact, it’s about finding hope.
For caregivers, palliative care is about providing the best quality of life and comfort for those who have been diagnosed with a serious illness, so that they can live life as fully and as comfortable as possible for as long as possible. It does not mean someone is going to die in a matter of days or weeks.
Palliative care is not limited to hospices or hospitals, either. It can be provided wherever the patient is or in many cases, chooses to be – at home, in a long-term care facility, at a hospital or in a hospice. (You might also like our Elizz article on Understanding Hospice Palliative Care.)
Holistic palliative care
The holistic approach to palliative care includes not only physical care, but also addresses mental health, spiritual care and caregiver support. Palliative care can be increasingly beneficial for those living with chronic pain or illness.
It is meant to help the person in your care to be as free from symptoms, and pain and suffering as possible. People who receive palliative care may even live longer than those who receive a different model of care for a serious illness.
It’s a good idea for caregivers to start conversations early about how to protect quality of life for as long as possible. These conversations should include understanding what is important to the person in your care, and how they define their own quality of life.
Discussing quality of life in palliative care can be uncomfortable for both of you in the beginning as you are both learning to be more vulnerable. Some people prefer to be spoken to gently, others want you to tell it like it is.
Share these conversations with palliative care professionals. They will listen, provide reassurance, and problem solve to help meet these goals. See our Elizz blog on the Role of Palliative Care Teams.
End of life palliative care
If and when a palliative care approach is closer to the end of life, palliative care professionals often visit the person at home and are prepared to deal with any number of situations.
Many palliative care patients are very afraid of certain things happening at the end-of-life, like enduring pain, having difficulty swallowing or breathing, or no longer eating. Palliative care professionals can provide medications to alleviate pain and symptoms. They will also talk with the person to help them cope with changes and have more peace of mind.
Overall, we also need a culture shift to stop denying that death is a natural part of life. Instead, we should be talking more openly about our own best exit strategy. Here are some simple, yet meaningful questions that you can ask the palliative care patient in your care, and ask yourself:
- What would a “good death” look like for you?
- What would make you more comfortable at the end of your life?
- How can your family caregivers and friends help you to meet these goals as much as possible?
Listen with intent when you’re communicating with the person in your care about their health or patient experience. Listen to understand – not to reply. This will lead to a richer caregiving and patient experience and help you in providing a better quality of life in palliative care.
If you are a caregiver involved in pediatric palliative care, read our article on planning and communication in Palliative Care for Children.
Elizz is a Canadian not-for-profit organization and is powered by Saint Elizabeth Health Care. In Canada, Elizz is the place to go for all things caregiving, offering a full range of services for caregivers and for the persons in your care.
If you still have questions about quality of life palliative care and you wish to speak with a a health care professional, please call Elizz at 1-855-Ask-Eliz (275-3549) or get in touch with a qualified Caregiver Coach.