Serious illness brings to the surface many emotions in ourselves and our loved ones. It forces us to adapt in ways that we had not anticipated. A serious illness, by definition, is one that changes our life path. It is an illness that may be treatable to gain more time, but it is not curable—it is an illness that shortens the time that is left.
Understanding the role of palliative care in the patient experience
Palliative care is often associated with dying and treatments that are given at the very end of life. This is, in fact, not the central purpose of palliative care. To better understand, we can look at the origin of the word palliative that comes from the Latin word pallium meaning “to cloak”. In other words, to palliate is to cloak, to cover up, the symptoms of an illness without curing it. Palliative care helps patients focus their energy on what matters most to them. Helping with symptom management can and should be offered early—not just at the end.
The mention of palliative care can cause fear and dread. These negative feelings come from the common scenario when patients are referred late in their illness when the treatment meant to prolong life is no longer working. Physicians will often wait on referring patients to palliative care in order to avoid patient distress when in fact early palliative care interventions are proven to improve quality of life and can sometimes prolong life. A palliative care referral will not worsen a patient’s condition and will not hasten death.
Another way to illustrate the role of palliative care is to think of palliative care as the umbrella and not the rain. If you had planned for an enjoyable outdoor walk or picnic on the weekend, then you may be quite disappointed to find out that rain is in the forecast. One way to still enjoy some of the outdoor activities could be to use an umbrella. “The umbrella works best if we provide it to patients before the rain begins—do not wait until the patient gets drenched!”*
In palliative care, we are here to provide help and support along this journey that can, at times, seem like a roller coaster. We are here to meet individuals anywhere along the course of their illness, whether their focus is to pursue treatments aimed at prolonging life or aimed at optimizing comfort—or somewhere in between. We want to empower patients to let us know their goals, wishes, or fears. We want to ensure that patients understand the bigger picture, and we want to help them prepare for the road ahead. Whenever possible, we try to relieve suffering.
“To cure sometimes, to relieve often, to comfort always.”
– Dr. Edward Livingston Trudeau
Understanding prognosis and the bigger picture
In the context of a serious illness, prognosis refers to an estimate of the amount of time that is left to live. While we do not have a crystal ball that tells us when one’s time will come, healthcare professionals can use different tools to help give a rough estimate. Certainly, this scientific process is by no means exact. We encourage having a discussion around prognosis to help patients prioritize and plan for what’s to come. If a person is not interested in knowing, this is perfectly fine.
How do we estimate prognosis?
We can generally estimate prognosis by understanding the general categories of serious illnesses and their progression. Inevitably, all serious illnesses cause a loss of autonomy over time. We break this down into three groups of illnesses: 1) advanced cancers, 2) end-stage organ failure, and 3) dementias, frailty, or neurodegenerative conditions. Of course, these are generalizations, and a healthcare professional can explain if a particular situation differs from what is presented here.
A rule of thumb that is used to predict prognosis is the speed of the loss of autonomy. When changes occur over months, then we tend to think that there are months left to live. When changes occur over weeks, then we tend to think that there are weeks left to live. The same would be true if changes occur over days. Click below to open each illness trajectory (illness course or progression) to learn more details.
* Zimmermann C, Mathews J. Palliative Care Is the Umbrella, Not the Rain–A Metaphor to Guide Conversations in Advanced Cancer. JAMA Oncology 2022;8(5):681-2.
Resources relating to the patient experience
The very popular podcast The Waiting Room Revolution aims to empower patients facing a serious illness and their loved ones. The podcast is produced by Dr. Hsien Seow, a palliative care researcher, and Dr. Samantha Winemaker, a palliative care physician. They are both based out of McMaster University in Ontario. One of their foundational messages is, “Hope for the best, prepare for the rest.”
Hearing the testimonies and voices of patients with a serious illness can help humanize the experience and make us feel that we are not alone. Check out Health Experiences, a patient-driven resource developed by Dr. Susan Law and fellow researchers sponsored in part by the St. Mary’s Foundation. This website continues to expand.
For Montreal-based peer support for patients living with cancer, check out the well-known community organization Hope & Cope. They are affiliated with the Jewish General Hospital’s Segal Centre, but they provide services to anyone living with or affected by cancer who is looking for services in Montreal.
The Canadian Virtual Hospice provides information on what can be expected in the final months, weeks, and days of life.