Palliative Care: Not A Last Resort
Faculty Profile: Marlene McHugh, Assistant Professor
Marlene McHugh is a pioneer in enhancing the role of nurses in palliative care. Having established the palliative medicine program at Montefiore Medical Center with Sean O’Mahony a decade ago, she now serves as the Center’s associate director for its palliative care service. McHugh began her career as an oncology and critical care nurse and served as a primary care provider at the height of the AIDS epidemic. It was this experience that instilled in her a desire to better manage her patients’ symptoms and led her to pursue a fellowship at Mount Sinai- Beth Israel Hospital. In 2014, she was named a Fellow in Palliative Care Nursing by the Hospice and Palliative Nurses Association (HPNA,) McHugh teaches courses on palliative care, primary care, chronic illness and pain management at Columbia Nursing and has published research on end-of-life and palliative care in numerous journals. She earned DNP, MS, and BSN degrees at Columbia Nursing.
Q: What are some of the major misconceptions about palliative care?
A: Many people mistakenly think palliative care is synonymous with hospice care. Palliative care differs from care meant to cure a disease, although it’s sometimes combined with curative treatment. Palliative care focuses on improving people’s quality of life when they have a chronic, advanced, or terminal illness. Patients are cared for not just physically, but also in mind and spirit. Palliative care provides relief from suffering by treating pain and anxiety, insomnia, and other problems. Some practitioners think that palliative care consists mainly of communication between provider and patient and the care isn’t evidence-based. In fact, palliative care providers continuously assess the health status of patients and use therapies to manage pain, depression and breathing difficulty. Managing patients with complex diseases and the distress caused by its symptoms can be very challenging. Palliative care can vastly improve patient’s quality of life and should not be looked at as a last resort.
Today, people are afraid of death. In previous generations, dying was considered a normal part of a family’s life cycle. Now people’s experience with advanced and terminal illness is limited because families live further away from each other. I teach families how to listen and respond to their dying loved ones and encourage them to be a part of this journey. I see myself as a midwife working with families and patients who have an advanced terminal illness.
Q: In the coming decade, health care providers will confront unprecedented numbers of elders with chronic disease. How can nursing respond effectively to this need?
A: One way nurses can make a difference is to know the communities where their elderly patients live. If they are working with an underserved population, for example, nurses need to understand the barriers patients may have in their communities such as fulfilling their prescriptions for pain medicine. Poor neighborhoods tend to have few pharmacies, and some don’t carry opioids. Housing also plays a big role. While working in the Bronx, I saw many patients come to the Emergency Department because they couldn’t walk up five flights of stairs to their apartments. Nurses need to connect frail, isolated patients with programs that can help them take advantage of available health care services.
Nurses also need to observe the patient’s family dynamic. They should know if their caregivers are physically and mentally stable, have drug dependency problems, or have issues with violence. In Columbia Nursing’s Family Nurse Practitioner classes, we encourage students to perform community assessments before they start their clinical rotations. We instruct them to walk around their patient’s neighborhood and note things like the number of grocery stores, or if the subway stations have access to elevators.
Q: Providing care to patients at end-of-life is emotionally challenging. How do you prepare your students to cope?
Debriefing is hugely important when dealing with end-of-life care or any trauma. During my fellowship, I spent four months working in hospice and participated in weekly, confidential group sessions led by a chaplain. These sessions helped me enormously. When dealing with end-of-life care, you have to have an outlet. I tell my students that if they aren’t comfortable communicating with others, this isn’t the right field for them.
Q: As millions of baby boomers age, most Americans still lack basic understanding about end-of-life care choices. What should be done to educate patients and their families about their options?
A: Health care professionals should provide education and guidance about advance directives, financial options and housing because the lay public looks to them for advice. We need to have prominent public education campaigns about aging and more research studies such as one finding that 88 percent of physicians would choose Do Not Resuscitate orders for themselves. Religious leaders can begin conversations about palliative care including hospice in houses of worship. Above all, people need to think about these issues earlier rather than later.
Q: What is the role of nursing within an interdisciplinary team when treating patients with palliative and end-of-life care?
A: As a nurse practitioner on a palliative care team, I function on the same level as my physician counterparts. My role differs from a physician because nurses are educated to view the patient and family as the unit of care. Nurses also consider patients’ psycho-social determinants of health, and understand transitions of care across settings based on their undergraduate nurse education.
Nurses are the front line providers of palliative care in hospitals, long term care settings and in the community. They are uniquely qualified to provide effective and compassionate care from easing pain to listening to their patients.