It’s a conundrum that the field of palliative care, one of the fastest-growing medical specialties focused on life-threatening illness – recognized by the World Health Organization as a human right – is not positioned in the next 25 years to train enough doctors to contend with a growing population experiencing hardships like cancer, advanced heart disease, and Alzheimer’s.
A new Health Affairs report lays out the projected need to replace some 40 percent of the current workforce of 7600 palliative care practitioners, and add nearly 2000 more with new funding and training mechanisms. The new research highlights how the palliative care teams, including social workers and chaplains, might bring savings to hospitals while dignifying lives and enhancing legacies. The report also recommends ways to sustain growth of the palliative care workforce – even as thousands of practitioners age and burn out.
We spoke with Dr. Arif Kamal of Duke University, the study’s lead author who’s an oncologist and palliative medicine specialist, to discuss how to clarify a doctor’s decision making about when to bring in palliative care.
Q: How do you determine when a patient needs palliative care?
A: Palliative care is patient-centered care available to people of all ages, including infants, driven by the hopes and worries of caregivers, families, and patients. It includes hospice, which focuses on caring — not curing —typically at end of life.
Palliative care is one of the fastest-growing medical specialties in health care. A decade ago, less than a quarter of hospitals had a palliative care specialty program or consult service. Now 85 percent of hospitals do. There are very few things that have gone from next to nothing to almost everything in health care in a decade.
Q: You’ve said palliative care compares to birth-related care. What do you mean by that?
A: Then [in birth and death] there’s only one chance to get it right and there’s an enormous opportunity to do that. Care, attention and intentionality are similar because you only have one chance to have a birth experience. It’s important to plan and convey the details – what room, what’s the music you want playing?
You don’t get to give birth to that child again.
We understand that when palliative care is called, some patients may die quickly. For others they are living with symptoms plus complexity such as financial concerns.
Q: What progress has the field made in guiding decision making? What rules are in place? How practical is the advanced heart failure rule?
A: We are trying to identify, are there rules you can use that can be applied to all settings that are feasible for palliative care practices to meet? For example, there’s a guideline that says all patients with advanced heart failure should be seen by a palliative care specialist. The reality is it’s not practical for everybody to be seen.
Q: Is this choice based on available resources?
A: Some practices do it that way. A more-pure approach would be to look at complexity and need to drive decisions. In the absence of knowing complexity or need that’s how practices do it. We can do 20 consults today, so we’ll cut it off at that and do that work.
[More often], we’re going to use predictive analytics. Once that exists, you can target the patients that have multiple comorbidities.
Q: What did your research establish about how to lower the barriers to enable more people to get into the field?
A: There is only research about physicians so far, previously published in the American Journal of Medicine. We expect no more or no less physicians in palliative care to practice in 30 years than there are today. Thousands of patients become Medicare eligible every day, [and] the absolute number will go up over time due to age.
We recognized there was already a crisis at play in terms of aging, and this current study took into account burnout. We modeled the workforce in 10,000 scenarios and found our central answer in the model. If 40 percent of the physician workforce is 56 or older, then it’s not surprising to think they will retire in the next decade. Thus, we will actually experience a decrease in physicians over the next 25 years, particularly if changes are not made to widen the pipeline of those entering the field.
Q: How is this different than what other doctors do to deal with complexity of patients?
A: Part of it is the coordination piece. Palliative care can help the patient see the forest. We ask so, how’s it going with all this?
Is this what you pictured would happen when you got sick?
No, they may say, I pictured myself on a beach, or I pictured having less pain or I pictured my wife would be more supportive. … I pictured something else, then you focus on what they pictured.
Often there can be conspiracy of silence that goes both ways.
Clinicians invested in a particular intervention or treatment program may be reticent to share truths or context of using treatment because they’re worried that they may be taking away the hope around that program.
In palliative care – we truly don’t have an agenda. And I don’t feel conflicted. In some ways we are a neutral body. You can tell me you’re not sure chemo is the way to go. I don’t have to tell the oncologist that. If you want me to talk to him or her I can. But I don’t have a dog in the fight, and I don’t lose my sense of purpose in our clinical relationship if you don’t pursue that treatment any longer….
All your conversations for frankly years on end have been about doing something that they can provide. The same way it’s awkward to walk into a restaurant and say, actually I’m not hungry, I just want a place to sit… It’s hard to walk into an oncologist’s office and say I don’t want chemo….
In palliative care we talk through those feelings, but maybe you needed a little bit of a push or permission to bring [a priority like child custody] up, and that’s what palliative care does.
Q: How do the cost savings play into the potential for growth in the field?
A: If you talk to patients about what matters, many say they would rather not spend their final days in the hospital. A hospital admission near the end of life is not only care that does not align with preferences, but also costly care. Many patients, when asked, would prefer to receive supportive care at home (e.g. oral antibiotics for a urinary tract infection) and not in the hospital. Palliative care talks through all the different options. And oftentimes the results of these conversations are preferences to avoid care in the ICU, not receive chemotherapy (for cancer patients) in the last few weeks of life, or to receive urgent care at home through specialized services (e.g. hospice care) instead of visiting the emergency department. Such early integration of palliative care has repeatedly been shown to reduce costs for patients, health systems, and payers through reduced utilization of low-value services near the end of life.
Q: Why is there so much burnout? Is it about not having the time?
A: Not being affected by others’ suffering that you are present for is like thinking you can stand next to a big waterfall and not get a little wet.
As we are trying to be empathetic with patients and their caregivers to walk in their shoes for a little while. In that process it’s hard to not internalize some of that suffering. Sometimes you are thinking, ‘Gosh that sick person is really sick and not that much older than me.’ Bad things happen to good people every day – people you get to know. We are present for suffering and we can’t fix it. That’s difficult. We give it time and space. We recognize the inability to fix. Sometimes that’s really hard. We see children, pregnant women, patients we’ve known for years die. That makes it difficult.
The other part is just the work requirements.
This is one of the fastest-growing medical fields so there is a ton of business.
Your own home life can suffer from the emotional exhaustion.
When you’re out in a social setting and you’re a cardiologist, people say you’re helping people live after a heart attack or you’re an oncologist, you’re curing cancer. That’s fantastic.
When you say you’re a palliative care professional, and people say, ‘Oh you’re helping people die.’
You are fighting two fronts. With patients, we are not taking away hope. We are not chasing death. We are bringing value to the table.