If Palliative Care increases length of life as well as improving quality of life, why do patients have to ask for palliative care? Why don’t physicians and nurses tell patients about palliative care? Why do they struggle to get registered with a palliative care or hospice program?

Andrea Warnick, a dear colleague from Toronto writes:

My dad was diagnosed with a progressive neurodegenerative disease.  He is now using a wheelchair, has great difficulty speaking. He has advanced disease.

As a hospice palliative care nurse I hear so much talk in the field about how referrals are often made far too late in disease process. All the literature states that palliative care should be accessed early (and my dad is late in the disease process) and should be available to people dying with chronic life threatening illnesses.

My dad has been followed by experts in the field for several years now.  Never once has anyone mentioned palliative care, nor the fact that he will die from this disease (which has a 100% mortality rate).  It is equal parts fascinating and deeply concerning.

When I tried to get him registered with a palliative care program in the city where he lives, I had to make many phone calls to advocate for registration.   Part of the difficulty in registration is that it’s hard to determine how long he will live for – could be six weeks, could be a year. This makes it especially hard to register with a program that requires a prognosis of one year or less for some services and six months or less to access other services.

It boggles my mind how much difficulty I had navigating the system, getting the supports, resources and registration, despite my professional background.

In this case Andrea’s dad has a chronic illness. Until ten years ago, the focus of hospice palliative care was in caring for people dying with cancer.  We are now learning about providing hospice palliative care for people with chronic illnesses.  We are learning to prognosticate for people dying with chronic illness.

If we are going to provide palliative care to people who are dying with non cancer progressive life threatening illnesses, then we need to change the criteria for registration with palliative care programs, and we need to change the mind sets of even our hospice teams who may forget that they are here to serve this population as well.

It might help policy makers to know that when people understand they are dying, when death is discussed, and patients discuss their goals of care, that people are often choose less acute treatments.  Perhaps the money saved in one account could help fund the increase support provided by palliative care programs.

Patients, family and advocates need to understand that health care professionals usually do not raise the topic of palliative care and nor do they discuss dying.  Therefore, patients and family should not wait to be informed, but should open the door for this discussion themselves.

Advocating for ourselves, our patients, our loved ones might be one of the most difficult and frustrating thing that we do. But when we do, we can reap the benefits:

Now that dad is connected to the right home care team, we are all feeling much more supported!