Palliative Care: Learning Then Leading by Example

Jennifer O’Brien’s problem wasn’t just that her husband, Bob Lehmberg, had been diagnosed with stage IV metastatic cancer, which was awful enough by itself. It was that Bob was a doctor, and doctors, by nature, can be fiercely independent and the most reluctant of patients — not only to their own detriment, but also to that of their loved ones as well.

Whether for privacy or pride, any physician’s desire to go it alone — to not seek outside assistance even in the face of life-threatening circumstances — might sound brave on the surface, but it can come with exacting and unintended consequences.

For example, toward the end of Bob’s 22-month battle with cancer, his oncologist told Jennifer during one of their final visits, “You can call me on my cell phone any time of the day or night.”

She looked at him and said, “With all due respect, you know that I can’t do that.”

Why?

“Because I was a physician’s wife,” she explains now, “and physicians don’t burden other doctors with their care. It’s just a fact. I mean, a physician has to be really, really sick before they’ll permit their spouse or other caregiver to call the doctor for them.”

The irony in Bob’s case: Once a successful plastic surgeon, he’d finished his 40-year career in medicine as a palliative care and hospice physician. Yet, in the end, he denied himself — and his wife — the very services and support he’d provided to so many stricken patients and their families during his last 10 years.

His decision to refuse help essentially isolated Jennifer and forced her to endure the full burden of responsibility for his care.

“Bob and I together were the entire do-it-yourself, interdisciplinary palliative care team,” says Jennifer, who chronicles her journey in her book The Hospice Doctor’s Widow: A Journal. “And quite frankly, there were moments that were utterly frightening.”

One morning, following a particularly difficult night, Bob told Jennifer he knew he was dying, adding, “What’s the worst that happens? I die.”

“No,” she replied, “that’s actually not the worst that happens. The worst that happens is that I come in here and find you unconscious and not dead.”

She explains, “Because he hadn’t admitted himself to a hospice status yet, I would have had no choice but to call 911, and they would have had no choice but to resuscitate him, and he would have been furious.”

It’s the kind of experience she’s working to help other physicians — other individuals — and their families avoid through education.

Beyond the Misunderstanding

It’s not uncommon for physicians to resist or refuse palliative care for their patients. The reason is often traced to confusion or lack of understanding about what palliative care is (or isn’t), how it works, or even how it benefits physicians, their organizations, or their patients and patients’ families.

This is a big miss, and it’s a miss sustained by a variety of misleading myths or by simple ignorance about the subject, including:

• Palliative care teams are an intrusive threat to physicians’ domain. In fact, these interprofessional teams complement — not compete with — the good work of physicians, easing the demands on their time while serving as a conduit of communication between physician and patient.

• “Palliative care team” is just a euphemism for “death squad.” Not only is this false, it’s a shameful misrepresentation of the altruistic individuals on these teams who are so devoted to improving quality of life for patients through prevention or relief of physical suffering or emotional anguish.

• Palliative care teams are brought in to “hurry up death.” In fact, with early intervention, they often are able to help extend and improve life.

• Palliative care and hospice are the same thing. Actually, hospice (or end-of-life care) is a subset under the broader umbrella of palliative care services.

Yes, palliative care teams do assist patients and families in end-of-life situations, but “they aren’t just for people who are dying,” explains Jessica Zitter, MD, MPH, author of Extreme Measures: Finding a Better Path to the End of Life. “Many patients who get palliative care go on to live for many, many years,” especially if that care begins during the earlier stages of illness.

“The job of the palliative care team is to attend to that suffering,” says Zitter, a critical care/palliative care physician with the Alameda Health System in California. “It has to do with figuring out what is going to be most helpful for the patient, which obviously includes treating any untreated pain and suffering, and exchanging information in understandable bites so that those people can step in as decision makers about what is next (and best) for them. That’s what palliative care is.”

Without a clear understanding of palliative care, physicians often end up performing procedures, ordering treatments, or prescribing medication based on medical training while failing to consider the patient’s advance directives and quality-of-life wishes: Respirator or no respirator? IVs or no IVs? Comfort or aggressive life-extending care?

This is where palliative care teams step in as patient advocates and liaisons with physicians. It’s also where advance care planning provides a helpful and important quality-of-life roadmap for physicians to follow.

Ideally, all patients should have documented advance directives. All physicians should, too.

Learn and Lead By Example

Citing a study reported in the New York Times, Sarah Beth Harrington, MD, notes that physicians complete their own advance care planning at a much higher rate (64 percent) than the general population (40 percent) — mostly, she believes, because “we know what end-of-life looks like in a hospital setting.”

“While 64 percent is great,” she adds, “I think we still have a way to go.”

Why is it important for more physicians to prepare their own advance directives? Because in learning-by-doing, they can then better counsel patients based on first-hand experience.

Learn it, then lead by example.

“That is a great way to talk to patients about it,” says Harrington, medical director of the palliative care program at the University of Arkansas for Medical Sciences. “If a patient comes to my clinic or the hospital and asks about advance directives, now I can say, ‘I’ve completed one, this is why I think they’re important, and this is why I think you should complete one, too.’ I think that really lends some credibility to the process.”

It’s a process that also opens a window into the world of palliative care for physicians and, by extension, for their patients. Failing to open that window, however, is “a missed opportunity,” Harrington argues.

“I tell my families and my patients that completing an advance directive is like giving a gift to your family, where we don’t have to guess what your wishes are, so we can honor those wishes at the end of life,” she says. “I would put physicians in the same category. It really applies to any patient that does or doesn’t do advance care planning.”

Access Your Palliative Care Resources

For seriously ill patients, difficult decisions are a nearly inescapable reality but can be made easier with advice about their full range of options and potential outcomes.

If education and information are the key, then palliative care resources can be an invaluable aid in that decision-making process if the physician chooses to access those resources.

Sometimes, that can be a big if.

“Physicians who don’t utilize the palliative care resources that are available to them are really missing out on an extra layer of support for their patients — and on providing better care,” Harrington says. “For example, if a patient with an advanced illness is trying to decide between hospice care versus another type of care, if they don’t know anything about hospice care, I don’t know how that’s a really informed decision.”

The bottom line: “Incorporating palliative care into your practice is providing the information that patients need to truly make informed decisions, to know what all their options are,” she says.

The problem is that many physicians don’t know how to access those resources or, worse, might not even know those resources are available to them. How can that be resolved? How can physicians be made aware of these invaluable assets?

“That’s a matter of marketing of the palliative care by the palliative care people, and many of us don’t do that very well,” admits Marc Ringel, MD, senior clinical instructor in the department of family medicine at the University of Colorado Denver School of Medicine. He adds, “[Physicians] simply need to know that we’re there.”

The most effective marketing, he suggests, is achieved by care coordinators and social workers because they’re the ones who often direct patients where they need to go.

“They also know where to find [resources], what auxiliary services you need that go with it, and not just how do you get the morphine drip you need to use at home, but what other services are available,” Ringel says.

So, how do you market your organization’s palliative care services? Here are some suggestions:

• Get on the agenda of staff or specialty meetings. “Have a 15-minute presentation with handouts — no more than 15 minutes [because] nobody wants to know more than that,” Ringel advises. “Telling them: ‘Here’s what we do’ is the best way to market to physicians, in my experience.”

• Websites. A resource about resources. “We’ve got a UAMS palliative medicine web page with a lot of resources that doctors can go to,” Harrington says. The same can be done at your organization.

• Grand rounds speakers. Invite experts to discuss palliative care. “We’ll use that opportunity with a room full of physicians to say, ‘And oh, by the way, if you want some additional resources, here is where you go,’ ” Harrington says.

• Target teams. Because physicians work in teams, the more individuals on those teams who are educated about palliative care, the better. “Really try to space out the education to not only include physicians, but [also] to include all the staff that they work with,” Harrington says. “With that approach, you’ve got more people with eyes on the patient and more discussions about how to better integrate palliative care into practice.”

Or there’s the direct approach: Introduce the palliative care team to the physicians.

“I think, in a way, that’s got to be part of the job,” Zitter says. “We need to bring the team into the hospital or into the oncology suite or to the places that it’s really needed, where people may not even know they need us yet. And then once we’re there, we need to show people how we can be helpful.”

That’s the easy part.

“The hard part is just getting a toehold with somebody in a clinic — getting one of the oncologists to say they’d like to have some palliative care contact,” she says. “And then, once you’ve got that toehold, you introduce the various partners in that group to the different things that we can be helpful with . . . using the language they will understand.”

Zitter acknowledges that an oncologist’s demanding schedule makes it difficult to find time for such discussions, a sentiment echoed by Harrington, who says, “I really do feel for practicing physicians today. We have to do so much with so little time, and I’m really not surprised that it’s hard to keep up with everything.”

Everything, that is, including palliative care. Making time to become familiar with it now would likely afford physicians much more time in the long run. That’s great for the doctor, but the ultimate beneficiary, of course, is the patient.

“To be able to bring understanding of what is happening to a patient will allow them to be more informed decision makers, which I think many physicians will appreciate,” Zitter says. “That will allow us to then move to the next step of making decisions about use of further treatments and technologies that really resonate and that feel like that’s what the patient wants. I think that’s something that really makes physicians and nurses feel better about the practice of medicine, when they feel that they are taking care of patients whose voice is really being reflected in the plan.”

Suggested Resources

Andy Smith suggests these resources for further exploration.

Books:

• Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter, Penguin Random House, 2017.

• The Hospice Doctor’s Widow: A Journal by Jennifer O’Brien, Etalia, 2020.

• Being Mortal: Medicine and What Matters in the End by Atul Gawande, Picador, 2014

• When Breath Becomes Air by Paul Kalanithi, Random House, 2016

• That Good Night: Life and Medicine in the Eleventh Hour by Sunita Puri, Penguin Books, 2019

• The Conversation: A Revolutionary Plan for End-Of-Life Care by Angelo Volandes, Gale Group, 2016

• The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life by Ira Byock, Penguin Publishing Group, 2013

Online:

• Tool Kit for Health Care Advance Planning, The American Bar Association. https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/consumer_s_toolkit_for_health_care_advance_planning

• The Conversation Project. https://theconversationproject.org

• Prepare for Your Care. https://prepareforyourcare.org/welcome

• National Hospice and Palliative Care Organization. https://www.nhpco.org/patients-and-caregivers/?pageid=1

• Starting the Conversation About End-of-Life Care from AARP. https://www.aarp.org/caregiving/life-balance/info-2017/talk-end-of-life-care.html

• Colorado Program for Patient Centered Decisions IDECIDE. https://patientdecisionaid.org

Video:

• Extremis. This powerful 24-minute Oscar-nominated documentary follows Jessica Nutik Zitter as she tends to patients in end-of-life situations. Available on Netflix. 2016.

• Caregiver: A Love Story. Tells the story of a man struggling to be the primary caregiver for his dying wife. Learn more at Caregiveralovestory.com . View the trailer at https://www.youtube.com/watch?v=jtKTngulaI4&t