Very few of us understand the actual meaning of the term "palliative care," including many physicians.
A good deal of our misunderstanding comes from the term’s origins in the care of the dying. When a doctor advises a patient to meet with a palliative care team, it's easy to understand how someone might jump to the wrong conclusions. The patient may think: Isn't palliative care for the dying? What aren't they telling me? Am I a hopeless case?
Palliative care has traditionally aimed to relieve suffering and improve quality of life for patients with advanced illness, and their families. But the types of situations that call for these interventions are much wider, ranging from pain, muscle spasms and major unintended weight changes to fatigue, insomnia, anxiety and depression.
What Palliative Care Can Do for You
Palliative care is often delivered by an interdisciplinary team that may include nurses, social workers, nutritionists and chaplains, as well as music, art, physical and occupational therapists. Their goal: symptom relief and adjustment to illness — in other words, helping us actually feel better.
The team focuses on increasing comfort and maximizing function, rather than controlling the underlying medical condition. The management of pain and symptoms is integrated into all stages of treatment; everyone knows what is being done and for what purpose.
Palliative care can cover our complete life span, though only lately has it been considered in such a broad context. Getting your wisdom teeth out? Good pain control is just what the dentist ordered.
Another example: childbirth. Before a new mother even gets to the delivery room, good palliative care might incorporate the services of an obstetrician, nurse, birthing coach, lactation specialist, nutritionist, social worker and exercise physiologist. Their input helps her define how to live during a pregnancy, and manage and prioritize the myriad adjustments a family must make. The team also helps her clarify her "goals of care" as she plans for the birth by addressing such issues as her preference for a drug-free delivery and the amount of pain she's willing to endure before medication is administered.
For care providers, overtly identifying a service as "palliative" could make an expectant mother mistakenly wonder if doctors perceive a real risk that she or her baby could die in childbirth, but the service itself is inordinately helpful.
On the cancer ward, of course, palliative care discussions employ a different vocabulary. When cancer patients are polled, their top concerns consistently include pain, fatigue, stress, sadness and problems with sleep. But with the primary medical focus being the removal or control of cancer, these worries may get lost in the rush to surgery, chemotherapy or radiation therapy. There just may not be enough time in an office visit to assess these issues and offer advice, which is why it’s important for the non-physician members of the treatment team to focus on these quality-of-life concerns.
How to Make Feeling Better a Priority
It is somewhat ironic that we need an extra medical provider, or even a team of providers, to help us feel better when we are sick. After all, isn’t that the primary goal for all health care?
Yet much of today’s specialized, high-tech care is performed not in our primary care physician's office but at other locales, making the role of the palliative care team all the more crucial. Think of burn units, heart institutes and dialysis centers. All are sites where advanced conditions are treated. They are not end-of-life facilities, but effective palliative care is central to their missions.
The bottom line: Doctors and patients should discuss the goals of care early on and revisit the plan throughout the course of treatment, so those goals can guide the process rather than trail it.
This conversation, frightening as it may seem initially, leads to better care all the way through our illnesses and opens us up to making choices that enable us to live better, in sickness and in health.