Palliative care 101

Palliative care is often misunderstood. Simply defined, it is an interdisciplinary branch of health care that helps patients manage serious illnesses.

To shed light on what palliative care is and the patients it serves, BeWell spoke with Stephanie Harman, MD, clinical section chief of palliative care in the Stanford Division of Primary Care and Population Health; clinical associate professor in the Department of Medicine; and co-founder of the Stanford Palliative Care Center of Excellence.

Summary: Why is palliative care beneficial?

Research^1-13 has demonstrated many benefits for patients who receive palliative care, including:

• improvements in quality of life ^1-4
• symptom control ^3,5-8
• spiritual well-being ^4,7,9
• psychological symptoms
• less aggressive care at the end of life ^1,10
• fewer hospitalizations ¹¹
• more days in hospice ^1,10
• less caregiver burden ^3,12
• fewer costs ^11,13
• and even improved survival ¹

Palliative care is appropriate at any stage of a serious illness.

Perhaps the biggest misconception about palliative care is that it is only appropriate for patients at the end stages of an illness. However, palliative care spans the whole breadth of the diagnosis — including while patients are receiving curative treatments, such as bone marrow transplant patients.

Palliative care helps patients and their families:

• plan their treatment
• cope with life changes resulting from their illness
• engage in advance care planning (which involves making health care decisions you want to receive if you were unable to make decisions for yourself)

Patients who receive palliative care are experiencing any serious illness or condition that is potentially life-limiting and is causing physical or emotional distress, impairment in functioning, or limiting the ability to find joy and meaning in life. Examples of illnesses for which patients seek palliative care include: heart disease, cancer, end-stage kidney disease, Alzheimer’s disease, and lung disease.

While palliative care is not exclusive to the final stages of an illness, sometimes it requires discussing if hospice — a health care discipline focused exclusively on quality of life for terminal patients — is the best option for that patient and their family. Harman notes that palliative care can still help patients with a terminal illness who do not want to use hospice, as some patients may still want to try different treatments.

Palliative care is interdisciplinary.

Palliative care is an interdisciplinary health care specialty and includes a team of medical, nursing, spiritual care and psychosocial professionals. The team seeks to understand and address the patient’s needs in four quadrants:

• medical
• emotional
• spiritual
• psychosocial

Medical needs may include discussing different treatment options and devising a care plan, including expert symptom management.

The palliative care team also discusses mental health and emotional needs that may arise from living with a serious illness and undergoing treatment.

The Stanford palliative care program employs chaplains trained in palliative care to address patients’ spiritual needs. Harman notes that the chaplain may not be the patient’s religion, but they are available to facilitate a connection to spiritual care providers from the patient’s faith as well as address existential questions the patient may have related to their diagnosis, such as making meaning out of their experience. The chaplain can also help with explicit requests, for example a hospitalized patient who wants to have communion.

Finally, the psychosocial quadrant includes understanding how the patient is coping, as well as the patient’s living situation, caregiving needs, family circumstances and other factors related to the patient’s daily life that may affect how they can manage their illness.

Harman notes that both the illness and treatment can influence all of these domains. The degree to which any or all of them is affected is unique to the patient and their life circumstances. Thus, it is the responsibility of the palliative care team to understand the patient’s unique situation to best help the patient manage and live with their illness.

 “The patient should expect an interdisciplinary team that will treat them and their family as a unit, will engage with them in addressing those four quadrants, and be attuned to the fact that each of those quadrants may be affected in different ways. The team will want to get to know the patient from that standpoint.”

Palliative care team members cross venues — including telehealth, hospital, and clinic settings. A patient may not need to see all of the team members depending on their needs, and they don’t have to be in a strict regimen of seeing the palliative care team. Some patients see the team more frequently and others will check in at various stages of their illness. Patients typically keep seeing their current physicians when they start palliative care, and the palliative care team works with the patient’s primary physician and health care team collaboratively on their care.

Health care decisions are unique to the patient’s values and circumstances.

The patient’s values and life circumstances inform their health care decisions. Harman explains that the team asks questions and listens to the patient and family describe their understanding of the patient’s illness and available treatment options. Then, the team engages in a discussion with the patient of the different paths and options without pressuring them to choose one decision over another. The team helps them openly consider the pros and cons of each option and supports the patient and their values through the decision-making process.

She gives an example of a metastatic breast cancer patient with school-aged children whose value is to have more time with her children and will opt for more aggressive therapies even if she feels weaker for longer. Another patient may value having more energy so they could better handle daily living requirements, such as caregiving for a parent.

“We spend time with people to help them think through where they are in the course of their illness and if things have shifted regarding what they want to prioritize. We help them figure out what treatments they want to go through for more time or more quality time and help them see options they didn’t realize they had. We explore these priorities with a person because, in the event the patient is unable to communicate, no one wants to have to guess.”

The palliative care team gets vital information from patients by examining daily logs or asking patients what they consider to be a good day. The team can also explore the patient’s support and connect the patient with available local and community resources, such as volunteer programs and churches. They can also better understand a person’s caregiving structure, which can include reliance on family, friends and others who are not licensed caregivers. She also notes that technology like home monitoring can help in understanding a patient’s needs.

“We really try to scratch the surface of what’s happening outside the moments we see people in the hospital, clinic or telemedicine channels — because most of the patient’s life with a serious illness exists outside of those places.”

Palliative care focuses on families.

Harman notes that our health care system is not set up well for a person with a family. Palliative care fills the void by including families and their unique circumstances in advance care planning and treatment decisions.

Harman’s palliative care program offers a service called the Children’s Support and Family Guidance Program, which is a joint venture with Lucile Packard Children’s Hospital. The program works with pediatric patients’ families and support networks, including schools and counselors, to bolster emotional support. Similarly, the hospital has worked with the palliative care program to help parents who have a serious illness diagnosis. The program helps parents in various ways, such as coaching and counseling parents on explaining the diagnosis and treatment to the child, and families can even receive home visits from social workers for extra support.

“It’s a wonderful program. It’s so needed because we have so many people who have children under the age of 18, and when I ask these patients what’s most important to them, it’s their children who are at the forefront of their minds.”

Patients can refer themselves to palliative care programs.

Patients often seek palliative care because symptoms like nausea, vomiting, pain and fatigue affect their ability to handle daily life. They can tell their physicians that they are interested in pursuing palliative care or physicians can recognize when a patient may benefit and refer the patient to a palliative care program. Patients can also refer themselves to a program without a doctor referral.

“The physical symptoms don’t often come by themselves. Usually there are issues with how people are coping. There may be issues with psychosocial support, help from family and getting around due to pain.”

Other factors that prompt a patient to seek palliative care could be concerns regarding current advance care planning, difficulty with treatment decision making or heightened needs in one or more of the four domains. Palliative care is less linked to a disease stage or state and is instead linked to the needs of the different domains.

Harman notes that some clinicians still have misperceptions on the purpose of palliative care. She believes that this is changing rapidly due to the increased presence of palliative care programs in the community. The Stanford program collaborates with teams in primary care, geriatrics, intensive care, oncology, cardiology and hospital medicine to promote access to palliative care and to provide useful resources to those teams. For example, the inpatient palliative care team participates in weekly team huddles with the oncology, critical care and cardiovascular intensive care teams to help identify patients who might benefit from palliative care. Her program has also met with different groups who are accessing services and joined multidisciplinary meetings for oncology patients in hospital to help spread awareness.

“More integration is happening. I think the big thing around palliative care is improving access. A lot of that is awareness that palliative care is an additional team and group of services that can support people with serious illnesses.”

Insurance will pay for palliative care.

There are no disease or prognosis requirements that limit access to palliative care from an insurance standpoint. This is different from hospice, which insurance typically only covers if patients have an estimated six-month prognosis based on the Medicare guidelines.

Harman explains that most health insurances will cover palliative care as a specialty visit. There can be issues when additional coverage is required for a managed care plan, but normally they are able to work with the insurance company to figure out a solution.

“We are really trying to remove the access issue. Because it’s a newer specialty, it’s taking some time for it to be viewed as part of routine care.”

Most people would want palliative care for themselves or family members.

A study from the Center to Advance Palliative Care¹⁴ shows that once people understood what palliative care was, more than 90% said they would want palliative care for themselves or a family member and that it should be universally available. Amy Berman, who was diagnosed with stage four breast cancer, testified to the U.S. Senate Special Committee on Aging that palliative care is the best friend of the seriously ill.¹⁵

“Increasingly, we live in a world where caregiving for a person living with a serious illness is more complex, and the illness duration is longer compared to the past. It has created a different experience of serious illness compared to 60 or 70 years ago when you didn’t have to plan for this length of time where you’re dealing with chronic symptoms.”

Harman adds, “Often, for people who don’t have the benefit of medical training and experience, a lot of things seem out of control as they face a serious illness. Everything changes, and their world is upended. It’s very overwhelming, so how can we sit with them and really facilitate them to see things that they have control over and how do we illuminate those choices? Those are the things that we can help with as a palliative care team and program.”

Katie Shumake
June 2020

Citations

1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
2. Bakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741-749.
3. McMillan SC, Small BJ, Weitzner M, et al. Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer. 2006;106(1):214-222.
4. Rummans TA, Clark MM, Sloan JA, et al. Impacting quality of life for patients with advanced cancer with a structured multidisciplinary intervention: a randomized controlled trial. J Clin Oncol. 2006;24(4):635-642.
5. Aiken LS, Butner J, Lockhart CA, Volk-Craft BE, Hamilton G, Williams FG. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med. 2006;9(1):111-126.
6. McMillan SC, Small BJ. Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial. Oncol Nurs Forum. 2007;34(2):313-321.
7. Rabow MW, Dibble SL, Pantilat SZ, McPhee SJ. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med. 2004;164(1):83-91.
8. Pirl WF, Temel JS, Billings A, et al. Depression after diagnosis of advanced non-small cell lung cancer and survival: a pilot study. Psychosomatics. 2008;49(3):218-224.
9. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730.
10. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400.
11. Raftery JP, Addington-Hall JM, MacDonald LD, et al. A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients. Palliat Med. 1996;10(2):151-161.
12. Meyers FJ, Carducci M, Loscalzo MJ, Linder J, Greasby T, Beckett LA. Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: simultaneous care educational intervention (SCEI): linking palliation and clinical trials. J Palliat Med. 2011;14(4):465-473.
13. Engelhardt JB, McClive-Reed KP, Toseland RW, Smith TL, Larson DG, Tobin DR. Effects of a program for coordinated care of advanced illness on patients, surrogates, and healthcare costs: a randomized trial. Am J Manag Care. 2006;12(2):93-100.
14. Center to Advance Palliative Care. Public opinion research on palliative care. 2011.
15. The John A. Hartford Foundation. Amy Berman Tells Senate Committee: “Palliative Care Is Best Friend of the Seriously Ill.”