Most of the time, when I’m asked to see patient for a “palli consult”, I ask them what their understanding of palliative care is. The number one answer is “I’m not sure”, or “I’ve never heard of it”. The World Health Organization defines it as “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.” When I’m meeting with patients and their families for a “palli consultation”, I find the need to shorten the definition for clarity: “care that focuses on the difficult symptoms of difficult diseases that require difficult conversations and decision-making”, or even shorter, “making feel better stuff that might be really hard to fix”.
Patients with severe and life-threatening illness and their loved ones are already experts on the complexities of being ill and of the progressive need for increasing care. While I’ve never been through the experience myself of receiving a life-threatening diagnosis, I have been blessed to care for many, many people with serious illness over the past 30 years of being a family physician with a specialization in hospice and palliative care. Family docs and palliative docs look at patients, not as a data point or statistic, but as the individual center in a nest of loved ones, friends and colleagues. I have long understood that if my patient is uncomfortable, their family is uncomfortable. If the family is “not OK”, neither can my patient be “OK”.
In my 30 years as a family doctor and 24 years of being a hospice and palliative physician, I have learned and seen that HOPE takes many forms. Initially a patient with new disease symptoms has hope that “this is nothing serious”, then hope that “this can be cured”, then ultimately hope that “I can feel better and live longer.” When I meet a patient with advanced neurological illness, I see the different faces of hope. Some are earlier in their illness journey, some quite late. Neurological diseases slowly (or quickly) rob a person of their ability to move independently, to perform their own personal care (feeding, dressing, bathing) and even their ability to communicate their thoughts and wishes to their loved ones. Often, by the time a person is seeing a palliative doctor, a lot of their hope for better has dissolved, like sand from a seashore constantly eroded by the tide or battered by sudden or turbulent complications. Patients and families dealing with neurological illness illustrate the multiple complexities of the loss of function and the loss of hope.
Palliative care for patients with serious illness involves asking deeper questions, about daily symptom burden, the effect on their function, but also about hopes and wishes for the present and for the future. Modern medical science has enabled and promoted extraordinary life-prolongation in the most advanced and deadly conditions. However, sometimes, prolongation of life at all cost is not always what the patient might want. My experience is that while most patients’ goals of care involve a longer life, the quality of that time is paramount. Most want to live longer, but how they feel and how they can spend their time with loved ones is a prime priority. Palliative care is not just symptom control but also about preparing for the worst while hoping for the best. Palliative care stresses the extreme importance of clarifying a medical decision maker (also known as a medical power of attorney) and more importantly of discussing those things in life that are most important to them: where they’d like to be, what treatments fit or don’t fit for them, what kind of life quality (or end-of-life quality) that person can imagine for themselves. Further, we discuss the utility of CPR in death situations and the patient’s wishes about sudden care in the event of cardiac or respiratory failure (ie. Code status). Finally, we converse about the necessity for a patient to express to their medical team and especially their family their wishes about care “at their very end”. That is, in the event of a terminal diagnosis or irreversible condition (since we all die at some point), to talk over and complete an advance directive (also known as a “living will”).
These conversations, while difficult, actually often lead to an increased feeling of hope in my patients and family members. I think that is because of the palliative care commitment to reduce symptoms, address unresolved problems and honor the wishes of the persons affected by serious and life-shortening illness. Patients with neurological disease face, as much or more as other patients, a possible premature loss of voice and choice about how their time is spent until passing away. Palliative care goals are not limited by time or prognosis, but in fact mirror goals in hospice care with a few exceptions. While palliative care can occur for a patient receiving active attempts for cure, sometimes for years, hospice care is usually reserved for comprehensive home care/care outside of the hospital and is more limited to a shorter prognosis (6-12 months or less). Interestingly but not surprising to those of us in the field, patients that receive palliative care and hospice actually live longer than those with the same diagnoses- likely because misery and uncertainty are decreased, better enabling the comfort and life of those patients. Palliative care and hospice care stress the improvement of quality of life and the ultimate respect for the patient’s wishes and those of their loved ones as articulated clearly before a crisis occurs. The encouragement of better care for patients with serious illness is stressed in both palliative care and hospice with a clear mandate to provide comfort and guidance as possible in often very difficult circumstances.
Hope may mean the wish for a very long life filled with comfort and autonomy but hope changes over time to be something else depending on the unyielding realities of disease. Hospice and palliative care is about hope for a better today, one that is comfortable and that emphasizes what the patient feels is most important during their time on earth, be it longer or shorter. I maintain daily hope for our patients and families and I am so grateful for the chance to partner with my colleagues in Neurology and Palliative care and with Hospice to provide the absolute best care possible to our shared patients with advanced neurological illness and other disease conditions.
To exactly answer your question, how do I determine when a patient may be approaching the need for palliative care?
I try to look at that person’s illness journey, mix that with knowledge of other patients I have cared for with a similar story, and combine it with experience gained through years of concentrating my focus on patient comfort, cure when possible and on their autonomy and self-determination for a good quality of life. Our purpose is to relieve often, to cure sometimes, to care always.
WHO definition source: www.who.int/cancer/palliative/definition/en/