New Guidelines Aim to Expand Palliative Care Beyond Specialists

The patient’s story “beautifully demonstrates” how palliative care can prevent suffering and improve quality of life, says Twaddle, who today is medical director for palliative medicine and supportive care at Northwestern Medicine Lake Forest Hospital in Illinois. And it’s why she wants more seriously ill patients and their caregivers to have access to the kind of person-centric, team-based approach she’s used for more than 3 decades. Too few patients get the day-to-day support they need to live as well as possible through serious or terminal illness, especially outside of hospitals and hospice care, Twaddle said in a recent interview with JAMA.

For that to change, more health care organizations and clinicians must embrace palliative care principles and practices, according to the newest guidelines developed by the National Consensus Project for Quality Palliative Care, which is comprised of 16 national organizations. Published by the National Coalition for Hospice and Palliative Care and endorsed by more than 80 groups, the practice guidelines have been around since 2004, but the newest iteration—which Twaddle co-chaired—broadens the focus from palliative care specialists to all clinicians who see seriously ill patients.

The following is an edited version of the interview with Twaddle, who explained how more physicians can implement supportive care.

JAMA: How is palliative care different from the traditional concept of medical treatment that many physicians may be more familiar with?

Dr Twaddle: Palliative care is team-based care that focuses on supporting those with serious illness and their families from the time of diagnosis through the trajectory of that serious illness, addressing the holistic needs of that person and family. It looks at them in the context of all they are and what matters most to them to figure out a treatment plan.

It’s an integrated specialty. It’s not another swim lane, so to speak. Medical care is often swim lanes. We’re each in our role, we’re each in our lane, we do our job. Whereas palliative care is synchronized swimming. The person and family are in the center, and the care helps to enhance communication, collaboration, and coordination. Palliative care specialists are particularly expert in symptom management, communication skills, and facilitating complex transitions of care across settings.

It’s a more holistic way of looking at the person and family in the context of serious illness vs a disease-based model.

JAMA: How can physicians know if a patient needs palliative support?

Dr Twaddle: Any person who has serious illness should be screened for unmet needs, symptom issues, practical aspects of care, social issues, psychological issues. Whether that then leads to the building of an interdisciplinary team is not always clear. Some people with serious illness are getting their needs met, and their primary care physician or treating specialists may be able to coordinate that very easily. They are, in essence, providing these competencies of palliative care and they don’t realize it. Other [physicians] need more formal structure around capturing these different aspects.

JAMA: Could you define “seriously ill”?

Dr Twaddle: A serious illness is one with a high risk of mortality and morbidity, with functional impact and also caregiving impact. That doesn’t say anything about prognosis. I think that’s very important to recognize. People can be seriously ill, and although they carry a high risk of mortality during that serious illness, they may recover. Good palliative support may be a key part of their recovery.

Probably where we see the most robust integration of palliative care has been in oncology. I also see patients who have progressive neurologic conditions like multiple sclerosis, Parkinson disease. Palliative care has a tremendous role in caring for people with dementia, and that relationship might go on for years.

JAMA: Can you give us some examples of where palliative care can take place?

Dr Twaddle: In every setting of health care. Within the hospital, which is a common place for palliative specialty teams to provide support, they’re often engaged alongside other treatment teams. They’re helping with sorting through the goals of care, helping patients and families truly find their voice and express their needs. They’re often called in to help with symptom management. Those symptoms might be vast, and not just in the physical domain. The psychological and spiritual aspects of suffering would also be embraced, assessed, and addressed by the palliative team.

In the office setting, which is the growing area of palliative care, palliative specialists see patients alongside other treating specialists. They may be seeing the patient in tandem with an oncologist, with a pulmonary physician, with a heart failure physician. Again, they’re helping with symptom management, but also helping with big picture management—some of the practical aspects of living with serious illness.

One of my favorite areas of palliative care is in the home setting. That is where you often get to know a person more deeply.

Palliative care isn’t about a setting. It’s ideally following a patient in all settings of care. The more we see programs being able to develop that type of capacity to see people wherever they are, the better the care outcomes can be.

JAMA: What’s the difference between palliative care and hospice?

Dr Twaddle: Hospice is a defined type of palliative care for people in the very end stages of illness. By definition, in order to access hospice care, which is supported by discreet insurance benefits in our country, one has to be terminally ill. The definition of terminal illness is a prognosis of 6 months or less if the illness follows its typical course. Usually when people enter hospice care, disease-directed treatments aren’t helping much anymore. They have decided to forego those treatments that target the disease and focus entirely on symptom management—treatments that enhance their quality of life—vs trying to fight the illness any further.

JAMA: Tell us more about the palliative care interdisciplinary team.

Dr Twaddle: There is a core group that is usually part of an interdisciplinary team. The physician, an advanced practice professional, a social worker, and spiritual care. However, we often see other members join this team in a very organic way based on the needs of the patient. If nutritional needs are significant, the nutritionist may be part of our team. Pharmacy is increasingly a part of interdisciplinary teams, which I love. Their input on choosing medication, delivery of medication, medication management, deprescribing can be very helpful. And then, based on the needs of the patient and family, there are more ad hoc additions to the team.

I think the particular challenges that physicians will have as they read these guidelines is to think, how do I make a team? This requires an ability to think creatively to access supports in the community.

JAMA: The new guidelines emphasize that all clinicians who see seriously ill patients should integrate palliative care principles and practices into their routine assessment and care. Why is this message important now?

Dr Twaddle: Every one of us who practices medicine is going to care for people with serious illness. We have a tsunami of aging in our world. It’s just an amazing time in our history, but the aging population brings with it an accumulation of illness. In addition, people who are undergoing treatments for serious illness, such as malignancies, heart failure, pulmonary disease, might be quite young.

I am always, in my heart, a primary care internist. That’s how I started my career. And I see palliative care competencies as further equipping our primary care physicians in this country to care for their patients throughout the trajectory of illness. This guideline really points to how physicians irrespective of specialty status can access these tools, can create interdisciplinary teams, and can continue to serve their patients. We want to support continuity, decrease fragmentation, and have patients and families have the optimal care experience.

JAMA: The guidelines promote support for family caregivers. What does that mean for physicians?

Dr Twaddle: One of the things that we have recognized increasingly is that the internal medicine model of the encounter with the patient all by themselves doesn’t really make any sense, particularly when someone is seriously ill. A serious illness does not just affect the person who is ill, it affects the family system in which they live. We need to incorporate the pediatric model into our way of providing care. We encourage patients not to come alone to appointments, but to bring the person who has assumed a lot of the responsibility in their care.

In the process of those visits, we have an opportunity to ask and observe how people are functioning in the caregiver role. Being a caregiver is a very dangerous occupation. There are increasing studies that demonstrate the impact that caregiving has on the caregiver’s health. Those caregivers who provide care for even small amounts of time each week, who are under stress in that role, actually increase their risk of mortality. So from a preventive health standpoint, it’s imperative that we assess that caregiver and understand how they are doing and what they might need in order to provide care. Also, how much capacity do they really have to be a caregiver? What’s their understanding of the illness? What’s their proficiency with the medications and some of the technologies that we send home? We are hoping that these guidelines are adopted and written into standards, and that they help influence policy and payment.

JAMA: What are some other key messages in the new guidelines?

Dr Twaddle: It’s very important that seriously ill patients are well supported across transitions of care. We know that people with serious illness, and particularly those with multiple complex illnesses, are very vulnerable when they move from, let’s say, an inpatient hospitalization to a skilled nursing facility, and then from a skilled nursing facility to the home. We know that at those points of transition, care plans can deteriorate. These guidelines speak to the importance of transitions of care and warm handoffs.

The ideal is seeing people in another setting of care. For example, one of the advance practice professionals from the hospital seeing the patient in the next setting can do worlds to enhance their symptom management, carry forth complex discussions, and decrease the likelihood that they will bounce back to the hospital because the transition did not go smoothly.

The guidelines also go deeper and wider into social and cultural aspects of care. Sometimes we’re not aware of what our biases might be, but by being curious and asking questions… Understanding how a person defines family, how people prefer to make health care decisions, how much information is helpful. Those aspects of assessment are very important and are put forth in these guidelines.

JAMA: What’s a warm handoff?

Dr Twaddle: A warm handoff is actually talking to someone about the patient and providing not just [clinical] information, but observation and nuance. What I enjoy about warm handoffs is entrusting the next professional with the care of my patient, by talking about who they are and what I’ve learned about them and their family.

JAMA: This call for action might feel overwhelming for physicians. How can they begin to incorporate palliative care into their practices?

Dr Twaddle: I do think for a physician just looking at the guidelines, they would say, “Wow! How in heaven’s name am I going to do this?” Though these guidelines look daunting, it is very much attainable to create a team. It’s going to require a new way of thinking about systems of care vs just encounters of care. There are 45 practice examples in the guidelines that come from real life. Hopefully, the practice examples will help facilitate some creative ways to reach solutions for every type of practicing physician.

A simple way to start would be our summary article that appeared in the Journal of Palliative Medicine, as an overview of the guidelines. I also encourage physicians to link with their professional societies within their community and certainly with their health system. More than 90% of hospitals have inpatient palliative care within their hospital. There may be an opportunity for physicians to find resources within the hospital that could help facilitate the care of their seriously ill patients outside the hospital.

JAMA: How can providing palliative care change a medical practice?

Dr Twaddle: I started in palliative care back when it wasn’t even called palliative care in this country. Certainly, within the AIDS epidemic, there was a great need for this holistic person-centered, interdisciplinary approach to patient care. Over 30 years, I have seen amazing outcomes. I truly believe that this approach means that people live well and, oftentimes, live better and longer in active treatment because their symptoms are well-addressed, their practical aspects of care are supported, and their caregivers—the people whom they love and worry about—are also receiving support. It is deeply satisfying to see our seriously ill people do well and, despite serious illness, achieve quality of life, symptom management, be at peace despite the ravages of illness, and see their families also thrive. I’ve lost count of the hundreds and hundreds of patients that I’ve cared for who have died. But the hallmark [of palliative care] is that death, when it comes, can be gentle.