“People sometimes assume palliative care is hospice care,” said Matt McGraw, DNP, APRN, Lifespark Nurse Practitioner, who specializes in primary palliative care. It’s an understandable mistake, he said, given that hospice is a part of palliative care and that they share the goal of bringing comfort and improving quality of life for clients and their families.
“At a high level, the difference is in the timing and the focus of the care,” Matt said. “Palliative care serves people across the continuum of their diagnosis—beginning, middle, and end—whereas hospice focuses on the end of life.”
Palliative care is for anyone with a serious illness, such as heart failure, kidney disease, cancer, or chronic obstructive pulmonary disease (COPD), but it doesn’t prescribe a specific treatment. “We focus on where the client is today, what the future might look like, how things might go well, and how they might not go well,” Matt said. “It isn’t about curing a condition or an illness, but about helping people live their best quality of life no matter what they’re facing.”
Shared decision-making
Palliative care providers like Matt help clients and families understand the diagnosis and recognize the stages, so they can respond appropriately. “As a clinician, I bring information about the condition and the treatment options, including the option to not treat,” he said.
Matt uses four questions as starting points to explore the diagnosis and the treatment, give clients and families a voice, and support shared decision-making:
“One: What can we expect from the disease process? When our client poses this question to their specialist—oncologist, cardiologist, nephrologist—it can mean what’s my prognosis, how will it change my day-to-day life, and what kind of symptoms will I have.
“Two: What can we expect from the treatment? That question can be about the cost, the side effects of the treatment, and the signs that the treatment is doing more harm than good. Whatever the treatment—a pill, radiation, surgery, dialysis, physical or occupational therapy, psychotherapy—our clients deserve to know what to expect.
“Three: How will we know if this treatment is working or not? This question is fundamentally about measurement: how are we measuring success? We can perform all sorts of diagnostic tests, such as blood draws, EKGs, CT scans, MRIs, but in palliative care, diagnostic data is just one part of the equation. We also have to consider the assessment findings—what we see, hear, and feel—and what our client is telling us. That’s going to help us determine how effective the treatment is right now, and how effective it might be tomorrow.
“Four: What would life be like without the treatment? We ask this question because there are often barriers to treatment, like the cost of copays, logistics around transportation, and side effects of chemo, radiation, or dialysis. If the decision is to suspend or end treatment, we’re back to that first question: what can we expect from the disease process?”
Advance care planning
A big part of palliative care is advance care planning, a process of articulating the client’s goals and preferences and identifying a proxy who can speak on the client’s behalf, in the event they’re unable to talk or communicate for themselves. All of this is documented in an advance directive which acts as an instruction guide for the client’s advocate and health care team. To be legally recognized, an advance directive needs to be either notarized or witnessed by two individuals who are not the client’s doctor or an immediate family member.
The role of the advocate is pivotal to advance care planning and to the advance directive, but documenting the person’s name on a piece of paper is just a small piece of the process, Matt said. “The advocate needs to know our client’s values, their expectations, and their definition of a good quality of life, so we can design a treatment plan that meets their goals and identify next steps if there is no appropriate treatment,” he said.
Lifespark also uses the POLST (a.k.a., Provider Orders for Life-Sustaining Treatment), a medical order that should align with what has been documented in the advance directive. The POLST guides emergency treatment, such as whether CPR should be used and how health care should be utilized, if the client can’t advocate for themselves. “I always remind clients that if they elect full code, which includes CPR, it will automatically put them on life support,” Matt said. That’s why he encourages people to consider setting a time limit for how long it’s appropriate to continue life support.
Garden analogy
In Matt’s experience, advance care planning is a process, not a one-and-done event. “Our lives are continually changing, so it’s important that to periodically revisit the advance directive and the POLST to make sure they still meet our clients’ needs and goals,” he said. “For example, is the surrogate decision-maker still an important stakeholder in the client’s life? And is the treatment plan outlined in the document aligning with what’s realistic today?”
He uses the analogy of tending a garden to explain the process of removing what’s no longer useful. “We have to weed that garden to make room for the plants we want to grow,” he said. “’Weeding’ might mean getting rid of a medication, updating the care plan, or revising the advance directive.”
Transition to hospice
Every illness, from the common cold to renal failure, has an arc, which can last hours, days, weeks, months, or years, Matt said. “Based on what I know about my client’s medical conditions, I can render a prognostic opinion, and if that opinion qualifies them for hospice, that’s something I can recommend as a treatment pathway,” he said, adding that he always asks for permission before discussing their prognosis.
Hospice care is a Medicare benefit available to individuals whose prognosis, as determined by two doctors, is six months or less. If the client chooses hospice, palliative care transitions to an end-of-life focus with the hospice team. “As a primary palliative care provider at Lifespark, I bring a palliative focus to all my clients,” Matt said. “One of the benefits of that is that when one of my clients enrolls in hospice, I can stay involved in their care.”
Of course, prognosis isn’t a hard science. “Statistics have shown that we’re wrong roughly 50 percent of the time—not the best track record, maybe, but for clients who outlive our prognosis, it’s great,” Matt said. “Wherever they are on the continuum of disease progression, palliative care can help them live their best life for as long as possible.”
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