Palliative care at Harvard Vanguard Medical Associates

Palliative care at HVMA promotes quality of life for patients and families with progressive illness.

Harvard Vanguard Medical Associates Palliative Care team members Sharon Steinberg, RN, MS, CS, (left) and Muriel Gillick, MD (Photo by David Stone for On Call )

Most healthcare providers know when to refer to hospice care a patient who is nearing the end of life and has chosen to stop receiving aggressive medical treatment. Fewer professionals and patients, however, know about the specialty of palliative care. Palliative care, according to the American Academy of Hospice and Palliative Medicine, has the goal of preventing and relieving suffering and supporting "the best possible quality of life for patients and families regardless of their stage of illness or need for other therapies." That's what the clinicians of the Harvard Vanguard Medical Associates Palliative Care Program strive to do - improve functioning and quality of life for patients and families who live in a "grey zone" of complex illness.

The focus of palliative care at HVMA
Harvard Vanguard Medical Associates (HVMA) is a nonprofit, multispecialty medical group practice that provides care to more than 350,000 adults and children at more than 20 offices across eastern Massachusetts. Mark Yurkofsky, MD, is chief of intense home-based, palliative care, and extended-care programs. He says the Palliative Care Program at HVMA began in 1999 as an outgrowth of the work physicians and nurse practitioners were doing with geriatric patients in skilled nursing facilities.

Many of these patients, he says, were facing progressive illnesses and confronting end-of-life issues. "We realized this was a different kind of illness," Yurkofsky says. "We needed skills and expertise to deal with diminishing function and chronic symptoms, and we needed to understand the patient's values in order to plan advanced-care directives."

In 1998, a year before the program began, current palliative-care team member Sharon Steinberg, RN, MS, CS, published a study along with Susan Block, MD, that detailed the types of medical and psychosocial care, relationships, communication, home services, and bereavement support patients and families wanted from their health maintenance organization. That study figured prominently in the initiation of the palliative care program that now provides treatment for adult patients with neurological, cardiac, pulmonary, renal, and other diseases as well as cancer.

In addition to Yurkofsky and Steinberg, the team includes physicians Muriel Gillick, MD, Bob Buxbaum, MD, and Rick Lane, MD; nurse practitioner Gisela Perkins, ACHPN, GNP; and social worker Joan Berlin, LICSW.

According to Gillick, palliative care focuses on three main functions:

• Assessing the patient's understanding of his or her condition, and providing education about advanced planning and directives
• Managing symptoms to allow for maximum functioning and quality of life
• Providing psychosocial support for the patient and family throughout the course of the illness

To make sure these functions are addressed, the palliative care team works in a consultative capacity with the patient's treatment team, primary care provider, and whatever specialists might be involved in the patient's care.

Information as intervention
When a patient is referred to the program, Steinberg first reviews the entire electronic medical record and then sends a note to all the people involved in the patient's care. In that note, she asks for their concerns and insights about the patient and the patient's condition. After the patient is seen, another note goes out outlining the palliative care team's recommendations and treatment plan.

In the initial assessment, according to Gillick, it is important to discover three things:

• What the patient thinks the diagnosis means
• What the patient understands regarding the nature of the illness
• Where the patient is on the trajectory of the illness

She says she always asks, "What's important to you at this stage of your life?" The answers give Gillick information that can be translated into goals of care with specific practical steps for achieving them.

Berlin points out that even after hearing a diagnosis and prognosis, people often don't understand the implications of what they've been told. They also usually need to know more about how insurance works, she says, and where they can find resources to help them deal with what they are experiencing.

The information and resources the team provides then become interventions in themselves. Consequently, the team members make it clear they will be available throughout the duration of a patient's illness and in conjunction with any treatment the patient is receiving.

Patients and family members need help also in anticipating decline before it happens. With some chronic illnesses, such as congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD), a patient's functional level will decline with each exacerbation. But because patients may experience multiple ups and downs, Perkins says, it can be hard for them or family members to accept that they may be getting to a stage where they need to consider which quality-of-life indicators mean the most to them.

As an advance practice nurse certified in hospice and palliative care, one of Perkins's roles is to help patients and families anticipate the time when the patient will not recover. At that point, it's important that symptoms such as dyspnea, heart failure, loss of appetite, and loss of mobility are managed with the goal of encouraging maximum functioning and quality of life on the patient's terms.

Managing symptoms to prevent and reduce suffering
Sometimes patients are referred to palliative care because specific symptoms, such as nausea, pain, or depression are not being treated effectively. Gillick says the consultants often start with a focus on symptoms in order to be concrete about what issues need to be addressed.

At other times, patients are referred because they have been diagnosed with a devastating, life-limiting illness. As an example, Perkins talks about patients with amyotrophic lateral sclerosis (ALS), a progressive, extremely debilitating neuromuscular disease. Dealing with ALS requires tremendous resources at each stage. "We would like all ALS patients to be referred at the time of diagnosis," says Perkins. "ALS is tremendously hard to deal with, and patients often have children who also deserve support."

As a social worker, Berlin can refer patients to the ALS Association and arrange for them to have adaptive equipment and computerized communication tools.

Addressing psychosocial issues of both patient and family
Each of the Palliative Care Program staff expresses an abiding commitment to the psychological, emotional, spiritual, and social issues inherent in life-limiting illness. Berlin emphasizes that the unit of care in this specialty is the patient and family. A major part of her role is to help patients articulate their values and wishes and then meet with the medical team to clarify the patient's preferences. "People have choices and don't know it," Berlin says. So she makes sure that all options are discussed.

As a social worker, Berlin says she has learned that listening, being there, and accompanying are what's most important. "We're not there to - and can't - fix the dilemma of dying," she says, "but we can help with emotional difficulties, family issues, communication, developing support systems."

And it's not just patients who need help with those things. Family members and caretakers do as well because, as Gillick points out, "These diseases take a tremendous toll on caregivers. They need concrete help and program referrals."

To meet some of these needs, Berlin has for the past five years facilitated a family caregiver support group whose participants discuss planning and legal issues, caregiving burdens and rewards, family relationships, and medical concerns. She says that in our culture, people with progressive illnesses and their family members can still feel stigmatized and become isolated. "It helps to have the opportunity to connect with others going through a similar experience, even when the illnesses are different." When a patient dies, Berlin follows up with bereavement materials, phone contact, and resources to bring the relationship full circle.

Professional caregivers also require help. The palliative care staff might be involved with a patient once or repeatedly for months and years. Berlin says there is an inherent risk of getting too involved or not involved enough. There is also a risk of burnout. One tradition that gives the palliative care staff and staff from related programs an opportunity to step back and reflect on the work they do is a special memorial gathering that Berlin organizes twice a year. "We pour out our hearts," she says, "and remember patients who have touched us. We draw comfort from songs, poems, and sharing."

Challenges, directions, and rewards of palliative care
Perkins emphasizes that professionals involved in palliative care need cultural competence. They need to be able to understand the array of approaches to autonomy and decision making that are inherent in other cultures. For instance, she remembers a Chinese family where providers needed to speak with the oldest family member instead of the patient, and death was not discussed openly.

Yurkofsky sees several tasks ahead for palliative care professionals. The first, he says, is to educate primary care providers to better manage patients with advanced illness by using palliative care approaches in their practice and by referring patients to the Palliative Care Program when necessary. A second task is to change the culture of cure that regards progressive illness as a failure. "We can help with bringing understanding, closure, and reconciliation at important points of life," he says. A third important task is to further expand palliative services into hospitals.

Steinberg emphasizes that the palliative care team excels at seeing the big picture and combining their expertise to meet a patient's goals. For example, when a patient with advanced COPD was being evicted from his apartment as a consequence of psychological issues, the team worked together to help him make the transition. Perkins arranged for him to get a better oxygen-delivery system and a power scooter; Berlin got him into senior disability housing; and Steinberg talked with him about change and adjustments. As a result, he was able to settle in happily and expressed gratitude to the team for their efforts.

Perkins summarizes the rewards of palliative care this way: "You face a depth of humanity in spite of the circumstances. It's a gift to take care of these patients."

How to find out more
You can contact the Harvard Vanguard Medical Associates Palliative Care Program by telephone at (617) 421-6760.

On their Web site, the Massachusetts Commission on End of Life Care offers resources and links to multiple agencies that can help professionals and patients deal with end-of-life issues.

The End of Life Nursing Education Consortium (ELNEC) provides nurses and nurse educators with training in end of life and palliative care.

Janet Cromer is a freelance writer and regular contributor to On Call. She received the Will Solimene Award for Excellence in Medical Communication for her On Call article "Drawing Out the Best in People" (September 2005).