“The essential principle of Palliative Care is that each human life has value and meaning…We do our work by learning about the unique hopes and fears of the person in front of us… And then do all we can to be present, to listen, to provide support and to relieve suffering whenever possible.”

– Dr. Diane Meier, Founder and Director Emerita, The Center to Advance Palliative Care (CAPC)

Palliative Care is specialized medical care for people facing serious and chronic illness. It’s appropriate and useful at any time in the course of advanced illness.

The patient’s Attending Physician or the patient themselves can request a referral to the Palliative Care team.  A referral generally leads to a Palliative Care Consult.

The team may include a physician, nurse practitioner, social worker, chaplain, and other specialists who work together to provide an extra layer of support.

All are specially trained to deal with issues that arise during serious illness.

The Palliative Care team focuses on symptom relief, no matter the diagnosis, to improve quality of life for both patient and family.

This specialized holistic support can be provided along with curative treatment and is focused on clarifying and preserving what the patient holds most dear.

“What’s Important to You Now?”

Throughout the disease process the Palliative Care team wants to know: “What’s important to you now?” The team’s guiding light: to listen, to learn and to respond accordingly.

Typically, Palliative Care doesn’t focus on end-of-life, or on time limits.

Yet eventually, at a self-determined crossroad, a patient may develop the resolve to say to their physician: “No thank you. I don’t want further aggressive treatment. Please just keep me as comfortable as possible.”

This is often when the Hospice Team is asked to participate. Hospice Care is simply Palliative Care when a cure is no longer possible or being sought. These distinctions will be more fully explored in coming Posts.

If a Palliative Consult appeals to you, it’s OK to ask your doctor or specialist about it. There’s no need to wait for your provider to bring it up.  Most patients and family members say they wished they’d learned about Palliative Care sooner.

In numerous studies, patients who received early Palliative Care showed significant improvements in their quality of life, in their frame of mind and, what often comes as a surprise, survived 25% longer than patients with a similar illness.

A Conversation Guide During Serious Illness

The palliative care specialists at Ariadne Labs in Boston, in collaboration with The Conversation Project, have created a Workbook for People with Serious Illness, entitled “What Matters to Me.” It’s designed to help clinicians and patients more skillfully navigate these important and often challenging conversations.

The Workbook is useful in helping people discuss their hopes, fears, and sources of strength during advanced illness.

One outcome is that more patients are receiving palliative support earlier in their illness and, as a result, are reporting less anxiety and suffering regarding their treatment options.

With a growing public awareness of Palliative Care and an increasing demand for its services, more clinicians are learning general palliative care principles and integrating them into their practice.

The most basic and universally needed: to offer one’s undivided attention, to meet patients where they are, and to perceive and acknowledge what’s most important to the patient and their family members.

Looking Ahead

 “A palliative approach offers the best chance of maintaining the highest possible quality of life for the longest possible time for those living with advanced serious illness.”    

-The Institute of Medicine’s Report, Dying In America

From Palliative Care’s inception, this moral and ethically based discipline has been about helping people discern what their priorities are, what care they prefer, and how to maintain an acceptable quality of life for as long as possible.

Note well: Palliative Care has never been about “death panels” or “rationing” and deciding “when to pull the plug on Grandma.” This misinformation campaign was a political and highly effective ruse, designed to stop the Accountable Care Act in 2009. In truth, the objectionable line item that was eventually removed from the Bill was to reimburse clinicians for the time spent discussing Advanced Care Planning with their patients.

With 10,000 Americans turning 65 every day, the growing demand for Palliative Care already exceeds the current supply of specialty trained doctors, nurses, and social workers.

The current aim is to  recruit and train more Palliative specialists while advocating for Palliative Care’s core principles to be embraced by other disciplines. As our culture becomes more familiar with Palliative Care, and its holistic model is incorporated by other specialists, patients and family members will know to ask for it by name.

A prevailing challenge: many physicians believe they lack the time and training to adequately address their patients’ psychosocial concerns, particularly those surrounding end-of-life care. Add to that, addressing the family’s concerns, and many clinicians feel at a loss how best to initiate the conversation.

The unfortunate default: many doctors are more comfortable focusing their end-of-life discussions on medical terminology, diagnoses, and procedures. These topics are important to patients but when a range of other concerns are left unaddressed there is a significant void for the Palliative Care team to address.

I see the Palliative Care model as our Healthcare System’s moral compass and North Star. This discipline is a brilliant and well measured response to a pressing and relentless human need — to find meaning amidst the ravages of advanced illness.

Palliative Care is, in fact, the mature fruition of the Hospice Pioneers’ vision to attend more compassionately to the whole person and to “total pain,” that which goes beyond the physical.

Next Week: Advance Care Planning is Called into Question

The value of Advance Care Planning and the Advance Directive (please see previous Post) have been called into question by some in the Palliative Care Field. Next week’s Post will explore this pivotal development and how it might affect the field of Palliative Care and advanced care planning.

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‘Until next week, Safe Journeys –

DSW