Palliative care has to be one of the most misunderstood elements of care that I’ve encountered. I count myself amongst the people who knew next to nothing about it before I was diagnosed with a terminal illness. I’d always lumped palliative care in with hospice, frankly, and I’ve discovered that many other people think the same way.
Palliative care is NOT the same as hospice and I believe it is extremely important for the public to understand this.
I really like the World Health Organization’s (WHO’s) definition of Palliative care:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.
* provides relief from pain and other distressing symptoms;
* affirms life and regards dying as a normal process;
* intends neither to hasten or postpone death;
* integrates the psychological and spiritual aspects of patient care;
* offers a support system to help patients live as actively as possible until death;
* offers a support system to help the family cope during the patients illness and in their own bereavement;
* uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
* will enhance quality of life, and may also positively influence the course of illness;
* is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.https://www.who.int/cancer/palliative/definition/en/
Sounds lovely, right? To have a team or even just one doctor totally focused on quality of life of the patient, fully committed to looking at the whole system around the patient and the whole life of the patient, and helping patients and their families understand the illness and each treatment, is amazing. I’ve had a palliative care doctor since I moved to Miami and those are my favorite appointments to attend.
Yet, I’ve learned that my experience is not the norm. Early on in my cancer experience, I learned of a fellow terminal patient who was refused palliative care at a large cancer center because she was terminal. Their definition of palliative care did not include someone who would be in treatment for life.
Since this literally flies in the face of all definitions I’ve seen of palliative care, it really surprised me. Doing further research and discussing palliative care with others has shown me quite clearly that the misunderstandings of palliative care is widespread. Many patients in rural areas have no palliative doctors anywhere near them. Many patients are in systems where a palliative care doc could help, but the only palliative docs are outside that health care system, which doesn’t work as well.
In the course of assisting with the Living Beyond Breast Cancer (LBBC) Metastatic Conference recently, I was able to “meet” virtually an amazing palliative care physician, Dr. Brooke Worster, who is the Medical Director of Palliative Care Services at Thomas Jefferson University Hospitals in Philadelphia. Her program, information about which can be accessed here, approaches each patient from a team perspective, focusing on meeting the needs of the whole patient and that patient’s family. I’ve connected my palliative care doc to Dr. Worster and I’m hopeful that will create even more discussions and interactions for the good of all patients.
Dr. Worster is participating in a new project headed by a friend of mine, Marianne Sarcich, entitled Advocating for Palliative Care. The concept and focus is to identify the barriers to every seriously ill person being offered palliative care, to create a model of providing said care (this is where Dr. Worster comes in) and then bring that model to those who need the information. We are still in the phase of discussing barriers and attracting the best stakeholders to effectively advocate.
If you are interested, contact Marianne and/or join the conversation. Bringing palliative care to those who need it the most is absolutely a worthy endeavor.