“So, do you have any questions for me?” my doctor asked breathlessly, standing in the open doorway of the exam room and peeling off her gloves.
I actually had several—a year’s worth of concerns that I had been saving for my annual physical. But in the last 15 minutes, there had been no time to ask them, what with the two minutes it took to restart the computer to access my chart, the questions she’d asked about my lifestyle habits, and the rushed physical examination (poke, prod, take three breaths).
“Yes, I have a few,” I said. To her credit, she closed the door and sat back down to hear them. But the fact that my concerns were being treated as an afterthought, to be fielded on her way out of the room, was frustrating to say the least.
This isn’t just a “me” problem. Studies show that the average primary care exam runs just 18 minutes long, a time crunch that can worsen care. In a 2023 survey of 2,519 patients conducted by the American Academy of Physician Associates and The Harris Poll, 49 percent of all adults said that they don’t always feel like their health care provider is listening to them, and 64 percent wish health care providers took more time to understand them during appointments. On the flip side, 81 percent of primary care doctors say they spend less time with their patients than they’d like.
Simply put, the status quo is broken. Over the years, alternatives to traditional primary care that promise more time and attention have cropped up, such as the concierge model, where patients have 24/7 access to their provider, and functional medicine (a personalized, holistic approach). But these offerings typically entail steep annual membership fees and aren’t always covered by insurance, making them untenable for most.
But there’s a smaller, growing subspecialty that has been quietly offering person-centered care for decades: palliative medicine. While it’s designed to treat people with very serious illnesses (like cancer or kidney disease), the palliative approach is what we’ve all desperately sought from our primary care doctors, the emergency room team, and every other health care provider: compassion, humanity, and dignity. It’s the antithesis to the cold, impersonal medicine we have put up with for too long.
What is palliative care?
At its essence, palliative medicine offers highly specialized care for people of all ages with serious diseases, from young kids hospitalized with leukemia to grandmothers with dementia. A team of doctors, nurses, social workers, and even chaplains work together to improve a patient’s quality of life and support them and their families through the course of their illness. It’s typically offered in a hospital setting but is also found in outpatient clinics and through home-hospice programs. And yes, it’s covered by most insurance!
Many think palliative care is only for people who are dying. But there are two main reasons people seek it out, says Kristina Newport, MD, the chief medical officer of the American Academy of Hospice and Palliative Medicine. The first is because they’re dealing with side effects or complications from existing treatment, she says, such as nausea or pain from chemo. The second is that they’re facing a difficult medical decision related to their disease, like whether or not they want to do another round of immunotherapy. In other words, they’re not on their deathbeds; they’re navigating difficult medical circumstances.
The patient appointment or family meeting is the core “procedure” in palliative care, says Lisa Stephens, a board-certified adult nurse practitioner and associate program director of the Hospice and Palliative Interprofessional Fellowship at Dartmouth Hitchcock Medical Center. A typical meeting, which can easily last an hour, covers basics like a physical exam and questions about your symptoms. After that, things get personal by design.
“People want human connection first and medical expertise second,” says Arif Kamal, MD, board president of the American Academy of Hospice and Palliative and chief patient officer of the American Cancer Society. He often asks new patients to share a favorite picture on their phone as an icebreaker. That simple picture acts as a jumping-off point for getting to know that person, their families, and their values or goals in order to give them better care.
The palliative team also asks about other things in a person’s life that can impact their well-being. A patient might share that they have no reliable childcare, are drowning in hospital bills, or are anxious about a new diagnosis. In response, a palliative team taps a social worker, legal aid, or even a faith community to help. They also check in on caregivers and family members to make sure they’re holding up okay. “We see our role as walking side by side with a person and their family going through a serious illness,” Kamal says. Adds Newport: “We’re thinking about all of the ways that illness and treatments can impact a person, and we consider those with our recommendations.” If a cancer patient wants to watch her grandson’s soccer playoffs, for example, the palliative team might work with the oncologist to try oral meds instead of in-office transfusions so she can be there for kickoff.
Diane Meier, MD, founder, director emerita, and strategic medical advisor at the Center to Advance Palliative Care, has a patient with multiple myeloma, a rare cancer affecting your plasma cells. When they first met 12 years ago, the patient’s pain from chemo was so debilitating that she had to quit her job and was in and out of the ER. Meier and her team figured out a pain-management plan that would literally get her back on her feet. Thanks to their intervention, the patient is back at work, goes to church, and attended her granddaughter’s college graduation—all while living with an incurable disease. “She’s doing things she did not have any hope for when we met her,” Meier says.
This person-first approach works, and the proof isn’t just anecdotal. Research suggests that getting palliative care involved early on can improve survival rates and quality of life. It’s also linked with reduced health care costs and fewer nonbeneficial interventions. Patients also tend to be happier with their treatment experience when palliative care is involved. Basically, everyone wins.
Can everyone benefit from palliative medicine?
Palliative medicine is primarily for people with serious illnesses. But all of the experts in this story believe that the specialty’s approach would make all areas of health care more compassionate and effective. “It’s the kind of medicine everyone deserves,” Kamal says.
So how do we give it to them? First, every single health care professional needs communication training—a key piece of the palliative care model. “If you cannot communicate effectively with your patients and their families, you can’t take care of them,” Meier says. Being able to clearly explain key health info—whether it’s talking through the pros and cons of certain treatment options or unpacking the significance of a new diagnosis—helps establish trust and allows a patient to make decisions from a confident, informed place.
Seems obvious, right? Yet clearly something is lost in translation from provider to patient. A 2022 study in JAMA Network Open found that many people misunderstood common medical phrases (like an “unremarkable” X-ray or “occult infection”) used in diagnoses and understood more straightforward, jargon-free explanations better.
Some health care providers undervalue communications skills, says Holli Martinez, an advanced practice nurse and the program director of the supportive and palliative care program at the University of Utah Hospital and Huntsman Cancer Institute. But as proven by basically every episode of The Pitt, talking with patients requires high emotional intelligence. Parents may fight over whether or not to vaccinate their kids, or a heartbreaking decision has to be made ASAP about organ donation or ending life support. “To have a nuanced, complex conversation, with lots of emotions and conflict and family members with different viewpoints and emotions and all that, is the highest-level skill we do in medicine,” Martinez says.
Symptom management is another much-needed skill across disciplines, says Meier. This is particularly true of pain, which is linked with a shorter life expectancy in older adults. “We have an obligation as a profession, in both nursing and medicine, to take pain very seriously and to make it as important a priority as we make controlling blood pressure and diabetes,” she says. Issues like shortness of breath, fatigue, and nausea are also very common, and not everyone is trained to treat them, adds Martinez. Yet evidence shows that addressing these kinds of symptoms can significantly improve quality of life, even in a short amount of time.
How to implement change
More quality time with your doctor, better communication, a more holistic approach to your life and needs…why isn’t this standard for all of us?
Our “time is money” health care system is partially to blame. “Clinicians are under tremendous daily pressure to see more people in less time, and their compensation is tied to it,” says Meier. “If you spend more time with the patient, that’s money out of your own pocket.” Because the insurance reimbursement model focuses on procedures and treatments, “there’s not always a recognition of how important it is to establish relationships and have meaningful communication,” adds Newport.
That same insurance model also ensures that palliative care is primarily only available in larger cities with big hospitals (who have bigger budgets to cover palliative services) rather than in more rural areas, Meier adds.
The core skills of palliative medicine—communication and symptom management—remain undervalued in health care training too. Meier says prospective doctors typically get two weeks of training in palliative care versus eight weeks in surgery. Other times, it’s an elective rotation rather than mandatory. “It’s not viewed as a ‘hard’ science,” says Martinez, and thus isn’t given the same airtime in a packed curriculum.
Despite these hurdles, lots of strides have been made in the past two decades to ensure palliative care is within reach should a serious illness strike. “Having palliative care involved is not equated to the end of life. It’s about helping people live better earlier,” Newport says. (If you or a loved one are in need, find a provider in your area with this tool.)
Meier also reports a recent surge in demand from doctors and nurses for these palliative skills. The Center to Advance Palliative Care, which aims to scale access to palliative care nationwide, has developed tools and training programs to help doctors and nurses with communication skills and symptom management, no matter their field. “We’ve had well over 1.4 million course completions,” Meier says.
Martinez, who leads a nursing palliative fellowship program, helped create a four-day immersion course in palliative skills that marries instruction with group communication demos that involve an actor playing a patient. “It’s one of our most popular trainings,” she says. “People that come to it are mid-career providers. What we hear in their evaluations is ‘I wish I had this in med school,’ or ‘I wish I had this 20 years ago.’”
The financial constraints require comprehensive policy reform to untangle. There could be better access to palliative care, Meier says, if the government required hospitals to offer it in order to be accredited (and thus receive Medicare and Medicaid dollars). And there need to be larger insurance reforms so providers are compensated more fairly, not just on how many procedures they do or patients they see. Affordable health care coverage is also critical for accessing any kind of medical care, and 62 percent of Americans say it’s the government’s job to ensure that coverage.
With the makeup of our current federal government, and its fixation on eliminating health care funding, it’s doubtful we will see systemic changes in the immediate future. But knowing that palliative medicine is an existing model—and one that doesn’t require annual membership fees to access—gives me hope.
In the meantime, educators like Stephens at Dartmouth Hitchcock Medical Center are working to change the system from the inside and build a broader model that focuses on a patient’s humanity and quality of life. “The more that we penetrate medical and nursing education to incorporate palliative care experiences, the more we will change health care going forward,” she says. “We have to teach the next generation.”
Jessie Van Amburg is a health journalist with over a decade of experience covering mental and reproductive health for some of the top media brands in the country, including SELF, Well+Good, Glamour, Women's Health, TIME, and Wondermind. She lives in Beacon, NY with her husband and cats, and is passionate about '90s television shows, climate justice community organizing, and the Real Housewives of Beverly Hills.
