There is no telling the depth of what people will share when given a chance.”

Ira Byock, MD

Palliative care is described simply as “specialized medical care for people living with a serious illness,” but most people do not know what it is, whether to ask for it or what to think if it is offered

When a person is dealing with a life-threatening illness, they become accustomed to the necessary medical focus on lab work, tests, appointments, and treatments. Palliative care brings the focus onto the person living with the disease to improve quality of life, help manage the burden of illness, and provide more holistic care. BJ Miller, a palliative care physician, describes palliative care as “reflective advocacy,” because it starts with what matters most to the patient.

Palliative care teams consist of trained, board-certified physicians, along with advance practice nurses, social workers and other specialists who work in hospitals, nursing homes, assisted-living facilities and in the community. These professionals have additional skills in managing a broad range of distressing symptoms: physical (pain, shortness of breath), emotional (anxiety, depression), spiritual (hopelessness, abandonment), or existential (loss of meaning of purpose).

Another important function of the team is to offer practical support to family caregivers and referrals to community resources which can be key to getting or keeping someone safely at home. 

Someone who is seriously ill is often being treated by several medical specialists. Trying to process what is happening can become complicated. Palliative care is often asked to facilitate “goals of care” meetings with the patient, family and medical team, to review the underlying medical issues and choices for care.

Looking at the ‘big picture’ and incorporating the priorities of the patient, often helps to determine the best treatment plan going forward. For example, some patients may want to avoid hospitalizations and stay at home, others may want to be treated with all that modern medicine has to offer, and still others may ask for the focus to be on comfort measures. By taking the time to sit and listen, the message to the patient from a palliative care provider is “you are the boss of me.” The opposite message from what an angry 4-year-old might say!

Why do we need palliative care?

Palliative care developed into a specialty within medicine and nursing as advances in medicine added years to our lives. People are living longer, but often with multiple chronic illnesses. Chronic illnesses such as heart disease, diabetes or dementia typically have no cure and can increase the need for ongoing medical care.

Understandably, hospitals are places for acute trauma and treatable illness. They are focused on fixing and curing and less equipped to deal with the day-to-day issues of patients living with a chronic disease. To meet this challenge for more coordinated, and compassionate care across all health care settings, palliative care has been steadily growing to fill some of these gaps in care.

John’s Story …

John has lung cancer and is living at home with his spouse and two children. His oncologist referred him to a home care agency with palliative care. The palliative care nurse practitioner makes recommendations to help manage his pain and shortness of breath, which have contributed to several emergency room visits.

During the home visit, John also wants to review and update his advance care directives to include a do not resuscitate order. His primary goal now is to try to stay out of the hospital. If his current chemotherapy is not effective, he shares that he will consider hospice if it can help him remain at home with his family.

His wife is given information about caregiving support groups and resources for a home health aide. The palliative care team will continue to follow John in the community to help manage his symptoms, support his family, and assist with a transition to hospice if needed.

How does hospice fit in?   

People often ask if hospice and palliative care are the same thing. Both palliative care and hospice share the focus of improving quality of life for seriously ill individuals and supporting their families. To be eligible for the Medicare Hospice Benefit, however, an individual should have a life expectancy of six months or less and have decided to stop treatments that are focused on cure.

Palliative care, on the other hand, can start as soon as a person is diagnosed with a serious illness and continue alongside potentially curative treatment, based on need, not prognosis.

The hospice team of physicians, nurses, social workers, hospice aides, spiritual care and grief counselors and volunteers help to manage care at the end of life. Hospice can be provided in the home, nursing home, hospice unit or anywhere else the patient calls home, and it offers bereavement support following a death. 

Together, palliative care and hospice offer an extra layer of support, from diagnosis of a life-threatening illness through to the end of life, including follow-up grief support for families.         

Payment for palliative care can include Medicare, Medicaid, and most private insurance plans. Here in Rhode Island, seven of our acute care hospitals have palliative care teams, and programs are expanding into the community. To find these available resources go to: https://getpalliativecare.org

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula.  She can be reached at bonnie@bonnieevansdoula.com.