From the Grace Archives | Originally Published January 4, 2010 | By Dr Harman | 5 Comments
What is palliative care? I get this question at least once a day, not only from patients and families but also from other clinicians. While many GRACE members are familiar with palliative care, there still exists a lot of confusion out there about what palliative care exactly is. To be honest, back when I started medical school, I didn’t know what it was myself.
The World Health Organization (WHO) defines palliative care now 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 of pain and other problems—physical, psychosocial, and spiritual.”
In the WHO definition, there is no mention of death and dying, because a patient does not have to be dying to receive palliative care. The overall philosophy of palliative care is the relief of suffering and the enhancement of quality of life. Most commonly, palliative care is practiced with a multidisciplinary team approach and focuses on the patient and the family as the unit of care. In the US, palliative care programs initially started out as hospital-based, or inpatient, programs but are now growing in the outpatient realm with clinics and other outpatient programs.
Why Palliative Care?
Palliative care has grown into a full-blown medicine specialty over the last several decade; few programs existed before the 1990s. In 1995, there was a large study called the SUPPORT trial of over 9000 patients at multiple hospitals that evaluated how well we care for seriously ill, hospitalized patients. It revealed that for half of the conscious patients who passed away in the hospital, 50% were in moderate to severe pain for the majority of the time. It also showed that clinicians were not doing a good job determining the preferences of patients with advanced illness and their families for aggressive, hospital-based interventions. This study highlighted the need for palliative care and for the improvement of our care for patients with life-limiting illnesses. Between 1996 and 2006, the number of palliative care programs in the U.S. grew from just a handful to over a thousand. In 2006, the American Board of Medical Specialties recognized palliative care as a new medical subspecialty, as 10 different specialty boards — including internal medicine, pediatrics, and surgery — sponsored and supported it.
While palliative care initially grew out of the modern hospice movement, it is no longer synonymous with hospice. However, its growth reflects the value of an approach to care that focuses on quality of life. Palliative care has also developed an additional focus on communications and decision-making, particularly in transitions of care.
Myths about Palliative Care
Myth #1: Palliative care means end-of-life care.
This is the most common myth, and there is good reason for its existence. The term “palliative care” was originally coined as a synonym for hospice and end-of-life care in the 1970s. It has developed over the last several decades in its definition to encompass more. Certainly palliative care clinicians are trained in end-of-life care, but have additional expertise in overall symptom management and the improvement of quality of life.
Myth #2: A patient cannot have curative care and palliative care at the same time.
This stems from myth #1, as hospice care and curative care are not usually concurrent. However, palliative care can complement curative care to provide symptom relief so that curative treatments are better tolerated. Palliative care clinicians care for patients at all stages of disease, from diagnosis to transplant to end-stage.
Palliative care and Oncology
Oncology and palliative care have had a close relationship, and much of this stems from supportive care. Supportive care is a term used in oncology referring to all of the non-cancer-focused treatments such as transfusions or growth factors (neupogen, epogen) and derives from its use in research for cancer treatments (a new cancer drug gets tested against “best supportive care”). There is considerable overlap with palliative care, but traditionally supportive care has not focused on the psychosocial and spiritual issues as seen in palliative care. The term “palliative” is also used in oncology for cancer-directed treatments that are not curative, but can improve the burden of the cancer.
How to find palliative care near you
Oncologists and other clinicians practice palliative care on a daily basis by providing treatment for symptoms and offering support to their patients; palliative care is not exclusive to palliative care specialists. However, it can be helpful to see a specialist in palliative care to augment the care you already receive from your primary physician. In general, palliative care programs operate with a multidisciplinary team approach—physicians, nurses, social workers, etc—providing additional resources for patients and their families. Here are few websites for patients and families looking for more information:
5 Responses to Palliative What?
Hi and welcome to Grace. I'm so sorry you're having this pain. Just to let you know I see this post and will respond ASAP.
Hi cancersurvivour welcome to Grace. Congrats on the "previous" aspect of your blood cancer. A haematologist is just the person to keep an eye on you with CT scans. Your CT...
Thank you for your comments Janine. Makes sense.
You have been through a lot already at such a young age, probably too much for someone online to say much. Perhaps your haemotologist and pulmonologist consult to...