A Primer on Palliative Care – Focus Is on Keeping Someone Feeling Well for as Long as Possible

Q. My mother has a terminal neuromuscular disease, but may have at least two to three more years to live. A friend of mine said I should look into palliative care, which she said is available to those with serious illness. I don’t want my mother to suffer. What is palliative care?

A. Palliative care is specialized medical care for patients with serious illness, at any stage of their disease, with a focus on making them feel as well as they can for as long as they can. Palliative care helps with managing symptoms such as pain, breathing difficulties, or anxiety.

Another focus of palliative care is to identify ways to help patients adapt to their illnesses and changes in ability to function. For instance, if your mother develops difficulty walking, and being able to get out of the house is a priority for her, it might be helpful to see whether assistive equipment could help her achieve her goal of maintaining her independence by getting out of the house and doing activities that bring her pleasure or joy.

Palliative care helps patients and families think through, in advance, what to expect from the natural progression of their disease, as well as to become informed about possible treatment options. For some patients, treatments and diagnostics are also part of living with serious illness, and are often discussed to anticipate impacts of treatments.

Formalizing and assisting with advance care planning is also part of what palliative care can assist with, such as identifying healthcare proxies — a legal document that allows you to name someone you know and trust to make healthcare decisions for you if, for any reason and at any time, you become unable to make or communicate those decisions — documenting resuscitation preferences, and both goals for care and goals for life.

Palliative-care providers think carefully about preventing and relieving suffering. They acknowledge that suffering can take many forms. For instance, your mother might have physical symptoms like pain, weakness, or shortness of breath. She may also have social needs or ways of coping that become strained under the weight of her diagnosis. Some people feel emotional and existential questions arise when faced with a life-limiting illness. Palliative care is an extra support that can be provided to patients who continue to seek curative treatments for their illnesses.

Q. How does palliative care differ from my mother just visiting with her primary-care provider and specialist?

A. Palliative care is delivered by a team. Providers often can spend more time with patients and have specialized and expert training in managing symptoms that arise with serious illness, communicating with the patient, and identifying realistic and patient-centered goals. Palliative care works in collaboration with primary-care providers and specialists — in your mother’s case, her neurologist — and often can help with tightening the communication between her various providers.

Q. Exactly what services would my mother receive, and from whom?

A. Palliative care is delivered by multiple providers, who differ from site to site. Teams in the hospital setting often include doctors, nurses, social workers, and chaplains. A growing number of cancer centers and other outpatient clinics have palliative-care providers who work with the other providers. Some long-term-care facilities also have palliative-care clinicians available to their residents. Most importantly, many aspects of palliative care, such as relief of symptoms, goal setting, and advance care planning, can be from a patient’s primary-care physician or advanced practitioner, who oftentimes knows patients and their families the best.

Q. What are the benefits to my mother?

The benefits of palliative care are many. Palliative care’s focus on quality of life and treating the person individually means that your mother’s care would be adapted to her unique needs. For instance, if your mother has symptoms that are impacting her quality of life, such as weakness or pain, these might be addressed through either medications or non-pharmacological interventions. Sometimes referrals are also made to physical therapy, for massage, or exploring ways to help adapt to changes resulting from progression of one’s disease.

Palliative care would also help with discussions around your mother’s own goals and values. Finding out what is important to your mother is critical. Discussing what she considers acceptable trade-offs, whether she has fears or worries, what her hopes are, and what supports she considers valuable are topics that can clarify goals so that care really feels right for your mother. Everyone is different, and honoring your mother’s uniqueness is a focus of palliative care.

Q. So, palliative care isn’t delivered just in the home or just in the hospital?

A. Palliative care is available in a variety of settings, including in the home, in nursing facilities, and in hospitals.

Q. My friend also mentioned looking into hospice for my mother, but said it is something that is offered only as her situation worsens. What is hospice, and what would the benefits to my mother be?

A. Hospice care is available to patients who are deemed by their physicians to be within the last six months of their lives. For those patients, hospice is a multi-faceted service that cares for patients and families during the last part of life. Hospice care is most often provided in the home, but can also occur in a nursing facility, hospital, and in special hospice residences. Hospice caregivers also work in a team and care for both the patient and the family. The benefits of hospice are expert symptom management and care that includes nursing, personal care, equipment, and medications that foster the ability for patients to live out their lives and die in the location of their preference with dignity and compassionate care. Hospice care also continues after a patient’s death through bereavement support for the patient’s family and loved ones.

Q. My friend also said there are benefits for family members when calling in hospice. How so?

A. Hospice care acknowledges that a patient’s family needs to be supported in order to provide optimal care for the patient. This additional care for families includes social-work support to address financial or caregiving needs, respite for caregivers, and bereavement support for family members for 13 months after the death of a loved one. Family members are part of the hospice-care team, and hospice spends time teaching, supporting, and assessing strains on the family as well as the patient.

Q. Does insurance cover either palliative care or hospice?

A. Both palliative care and hospice are covered by Medicare, Medicaid, and most private insurers.

Q. Is there anything else I should know about either service?

A. There are several resources available to find out more information about palliative care and hospice. For instance, getpalliativecare.org is a great place to start for information about palliative care, and caringinfo.org has information about both palliative care and hospice.