Optimizing the management of symptoms and stresses that patients with life-limiting illnesses and their families experience while physicians pursue life-extending treatments, a team of palliative care experts leverages an extensive support network and empowers patients to make key healthcare decisions.
Pictured L–R: Jeffrey T. Berger, MD, FACP, Division Chief of Palliative Medicine and Bioethics at Winthrop-University Hospital, and Pavel Groysman, DO, attending physician, Division of Palliative Medicine and Bioethics at Winthrop-University Hospital
Though palliative care is relatively young in comparison to other medical specialties, Jeffrey T. Berger, MD, FACP, Division Chief of Palliative Medicine and Bioethics at Winthrop-University Hospital, believes that it reflects the essence of the practice of medicine. By getting back to the basics of comfort-based medicine, palliative practitioners can have a positive effect on both patients and those who care for them.
“If you think back 100 years ago, medical science wasn’t well-developed, and physicians primarily focused on keeping people comfortable by being good listeners,” Dr. Berger says. “But now, deploying technology consumes a great deal of clinicians’ efforts. Palliative care focuses on the complexities of decision making and works to align treatment plans with the patient’s wishes during complex illnesses.”
The belief that palliative care has the power to change the patient experience for the better led Dr. Berger to spearhead the development of Winthrop Palliative Care — a stand-alone division in the Department of Medicine at Winthrop-University Hospital that is at the forefront of the palliative care movement. The program’s clinicians partner with the hospital’s specialists as well as with referring community physicians to offer both inpatient and outpatient services.
“We are increasingly involved with patients who can live for a long time with life-limiting diseases. Patients with significant symptom management requirements also need to plan ahead. That is why we get involved earlier in the disease trajectory.”
— Jeffrey T. Berger, MD, FACP, Division Chief of Palliative Medicine and Bioethics at Winthrop-University Hospital
“Winthrop Palliative Care is a separate division unto itself,” Dr. Berger says. “This is different from other programs, which are under the umbrellas of other departments. We thought it was important for palliative care to have its own, freestanding identity because we want our services to be as widely accessible as possible. For example, we care for a number of younger patients with lung disease and others with gynecological malignancies. These patients are typically in their 40s or 50s and may not necessarily align with cancer services or geriatric services. We don’t want such patients to feel alienated, so we structured our program differently.”
Jeffrey T. Berger, MD, FACP, Division Chief of Palliative Medicine and Bioethics at Winthrop-University Hospital, and Pavel Groysman, DO, attending physician, Division of Palliative Medicine and Bioethics at Winthrop-University Hospital, review a patient’s test results.
Experts discuss the status of their patients at weekly interdisciplinary team meetings.
Dr. Berger speaks with a patient about her care plan.
Palliative care is appropriate for patients in a variety of medical situations, including those with congestive heart failure, cancer, dementia and pulmonary hypertension. Winthrop’s program is specifically designed to address the palliative care needs of patients who are 18 and older.
“Pediatric palliative care is far less developed throughout the country compared with adult programs,” Dr. Berger says. “Young patients have different needs, and children can be sick for years or their entire lives. It’s an area that could benefit from greater attention and resources.”
In the Hospital and Beyond
Since its creation in 2007, Winthrop Palliative Care has grown substantially. Specially trained palliative care physicians, nurse practitioners and social workers work collaboratively with other area physicians to create and implement coordinated care plans that focus on improving the lives of patients and their loved ones as they face the stress and discomfort that accompany life-limiting illnesses.
The program’s mission of optimizing comfort is increasingly popular among practitioners and patients, as evidenced by an increasing number of requests for consultations and referrals. In 2015, providers in the Winthrop Palliative Care program performed in excess of 1,000 consultations — a patient-volume increase that can be attributed to the recognized excellence of the program’s staff.
“What’s remarkable here at Winthrop Palliative Care is that each of our team members is either specially trained, specialty-certified or both in their respective palliative care discipline,” Dr. Berger says. “Three of our four nurse practitioners have gone through a palliative program as part of our nurse practitioner training program. Our fourth nurse practitioner has been providing palliative care since before palliative care became so formally organized, but she is certified nonetheless. One of our new social workers came through a social work palliative care program — one of the six or so in the country — and our other social worker has been involved in developing palliative care programs for decades. Each of our members has a career commitment to palliative care.”
The growth of Winthrop Palliative Care mirrors the national trend in palliative care provision. According to a 2015 analysis published by the Center to Advance Palliative Care (CAPC), the number of hospitals that have at least 50 beds and provide palliative care programs increased 165 percent from 2000 to 2013. At this rate, CAPC analysts estimate eight out of 10 comparably sized hospitals will start palliative care programs by 2017.
“As global awareness increases about the impact palliative care has on the quality of patients’ lives, the field will continue to grow,” says Pavel Groysman, DO, an attending physician with the Division of Palliative Medicine and Bioethics at Winthrop-University Hospital.
While many patients referred to Winthrop Palliative Care face imminently life-threatening illnesses, Dr. Berger and his team have worked diligently to share the benefits of palliative care with nonterminal patients.
“Unlike hospice care, patients with whom we work do not commit to a symptom-management plan that doesn’t involve the possibility of life-extending treatments,” Dr. Berger says. “We empower patients to make decisions regarding their care and provide additional support for their families.”
Such control and support can be a boon for patients, who often endure challenging symptoms such as pain, vomiting and difficulty breathing.
Winthrop Palliative Care leverages an extensive network of ancillary services, such as pastoral care and mental health counseling, to address the emotional aspect of health care. Experienced providers also discuss advance care planning to ensure patients can access the full complement of options available, which includes hospice care. Advance care planning may also include building and implementing an end-of-life care plan and other preparations that are sometimes difficult for families to coordinate without support. Counseling is available to help select healthcare proxies and construct living wills that can be enacted if patients cannot communicate their wishes. Each piece of the palliative care plan is carefully constructed around the wishes and expectations of patients and their families.
“Each member of the team is expected to recognize and address emotional concerns and provide support,” Dr. Berger says. “That sets us apart. No one on the team limits themselves to silos — there is a lot of interfacing between disciplines to prevent gaps in care. The hallmark of palliative care is that it is interdisciplinary.”
That same interdisciplinary collaboration and support extend to referring physicians and specialty providers, such as clinical pharmacists, clinical psychologists and pastoral care professionals, who work with patients in need of palliative care. Every day, the palliative group holds a meeting to discuss patient cases that can often be ethically and/or emotionally charged — which is why it is of the utmost importance to maintain open lines of communication with patients and their families.
“We have to bring the views of each provider on the multispecialty team and the members of the patient’s family into harmony to implement appropriate care plans,” Dr. Berger notes. “We are extremely mindful of concerns felt by everyone involved in the process. That’s an important component of the work we do — articulating the ethical issues presented by challenging treatment decisions that accompany caring for patients with life-limiting disease. We also recognize that caring for such patients is stressful for clinicians. Caring for the providers involved in the healthcare plan is an important part of the work we do.”
Ethical issues requiring thorough exploration can include the decision to enter hospice care — a discipline that falls under the umbrella of palliative care but differs in the fact that curative treatments are not pursued.
“Many times the challenges of medical decision making are overlaid by the cognitive-emotional stressors that patients and families experience,” Dr. Berger says. “That’s why every member of our team addresses these aspects of decision making with our patients and families.”
To prepare patients for important medical decisions, providers at Winthrop Palliative Care walk patients through every aspect of the treatment process. Those whose illness may inhibit breathing or eating should decide whether to undergo emergency procedures, such as the insertion of ventilation or feeding tubes, before they reach the point where they cannot make such a decision. Winthrop Palliative Care providers also educate patients about do not resuscitate forms and can help clarify preferences on Medical Orders for Life-Sustaining Treatment forms.
Looking to the Future
Although the program is successful in its current format, Winthrop Palliative Care is poised for growth, an initiative that is of particular interest to Dr. Groysman.
“One of my goals for Winthrop Palliative Care is to incorporate other departments and divisions at Winthrop-University Hospital to develop a more academic program,” says Dr. Groysman, who has a special interest in the care of patients with oncologic diseases and also brings a passion for clinical research to his role as attending physician.
Dr. Groysman speaks with Kathleen DiGangi Condon, nurse practitioner in palliative care, about the next steps for a patient’s treatment.
Some of the members of Winthrop’s Palliative Care Team include (L–R): Kathleen DiGangi Condon, nurse practitioner; Dr. Groysman; Dr. Berger; Dana Ribeiro, MDiv, LMSW; and Jessica Weinberger, MS, FNP, ACHPN.
The Supportive Oncology program — a collaborative effort between palliative care specialists and experts at Winthrop-University Hospital Cancer Center — exemplifies the need for palliative medicine in disciplines that often face complex disease processes.
“Cancer patients are vulnerable because of the natural burdens of their illness and burdens associated with disease management,” Dr. Groysman says. “Such patients have many psychosocial needs, which our social workers and other clinicians are able to support. Traditional medicine cannot provide fully comprehensive care under the restrictions of the modern medical system. We are willing to expand the reaches of traditional cancer care to address the needs of the whole patient, be it managing symptoms or providing psychosocial and/or spiritual support.”
Regular interdisciplinary meetings between the palliative care group and their colleagues are held to help identify the resources, which also include music and physical therapy, to provide patients with the care and support they need.
Palliative care specialists meet with oncology patients after initial diagnosis to identify the physical, emotional and spiritual burdens of both their disease and treatments. It’s a lasting relationship that begins early in their treatment.
“Research suggests that patients who receive palliative care earlier in the treatment process live longer with a cancer diagnosis than patients who only undergo traditional oncologic care,” Dr. Berger says. “Patients are also more likely to stay on cancer protocols. Palliative care can help some patients live better and longer.”
“The full benefit of palliative care hinges upon referring physicians reaching out at the earliest possible time,” Dr. Groysman adds. “We’re in constant contact with multiple specialists and primary care providers with whom we partner to co-manage patients undergoing challenging cancer treatments. The program itself is rapidly expanding, and our commitment to meet the needs of our patients is demonstrated by our expansion into outpatient services. Each member of our team plays an important role in helping the program realize its full potential.”
The benefits of a well-constructed program are demonstrated by research published in TheNew England Journal of Medicine, which shows that mean survival rates for patients with metastatic non-small-cell lung cancer were extended if they received early palliative care. They also reported higher quality-of-life scores.
The benefits of supportive oncology extend to healthcare system management as well. In a study published in the Journal of Clinical Oncology, researchers found that early introduction of palliative care reduced the cost of care for patients who were hospitalized with advanced stage cancer. Patients who had palliative care consultations within six days of admission had hospital costs that were 14 percent less than those who did not receive them, and patients who had palliative care consultations within two days of admission saw a 24 percent reduction in hospital costs.
Jessica Weinberger, MS, FNP, ACHPN; Dana Ribeiro, MDiv, LMSW; Leith Shields, Nursing Assistant; and Renee Bodley, RN, consult about a patient’s needs.
Dr. Berger and Dr. Groysman review a patient’s chart.
The future of Winthrop Palliative Care’s Supportive Oncology program is bright. Drs. Berger and Groysman foresee expansion in the near future as the number of patients referred to them by area oncology programs continues to grow.
“We see a lot of cancer patients in the hospital and as outpatients, but my hope and plan is to further grow the supportive oncology branch of palliative medicine in conjunction with local physicians,” says Dr. Groysman.
As the important role of palliative medicine begins to be truly understood and demand for these patient-focused services increases, Winthrop Palliative Care is rising to the challenge, responding with focus and innovation to the needs of patients with life-limiting illnesses.
For more information about Winthrop Palliative Care, visit winthrop.org/PalliativeCare.