Palliative Care: What It Is and Why It Matters to You
By Robin Shepherd
People often confuse the term “palliative care” with “hospice” and assume it’s only for people who are dying. Palliative care is available to anyone with a serious or life-threatening illness, from time of diagnosis to time of death.
Palliative care is an approach to care that reduces stress and suffering by improving quality of life for patients and their families based on a patient’s needs and wishes for care. It works alongside regular medical care, but treats patients holistically, looking beyond their illness to address unmet physical, psychological, social, and spiritual needs.
As an example, let’s look at palliative care’s role in dementia care. Dementia is a brain disorder characterized by progressive and severe loss of cognitive, physical and autonomic functions as well as changes in mood, behavior, perception, and sleep. It robs people of their ability to carry out basic activities of daily living and increases their dependence on others for their daily care.
Dementia is progressive—its symptoms worsen over time. Currently there is no cure for neurodegenerative diseases that cause it, including Alzheimer’s, vascular and Lewy body diseases. Palliative care offers tremendous benefits for patients and their families on the difficult journey with dementia.
Palliative care is provided through teams which can include physicians, nurses, social workers, occupational and physical therapists, and chaplains; who work together to “palliate” suffering and stress through early identification, correct assessment, and treatment of dementia symptoms. They also address practical needs, such as help with advance care planning, medical decision making, care transitions, and bereavement counselling. This is critical when someone loses their cognitive ability to understand, make decisions, and communicate their wishes to others.
Studies have shown that palliative care not only improves health outcomes but reduces unnecessary hospitalization, health system encounters, and associated cost burdens for patients and families living with dementia.
Many people need palliative care, but a low number actually receive it. To improve and expand access to palliative care, we need to raise awareness, improve health care policies and funding, provide better access to care for underserved groups, and more training for health care and social services workers engaged in dementia care.
Every patient should know that if they receive a dementia diagnosis from their physician and aren’t referred to palliative care, they have the right to request a referral and to be covered by Medicare.
Services are covered through Part B for doctor/nurse visits or Part A if provided during a hospital stay; to manage symptoms and improve quality of life. Hospice, a form of palliative care generally recommended when a patient’s prognosis is six months or less, is also covered for dementia.
During the month of June, the Alzheimer’s Association leads public awareness efforts focused on dementia; a good time to talk about dementia and palliative care in our communities. Let’s work together to ensure that palliative care is available to everyone, regardless of income, age, race, or ethnicity.
Robin Shepherd is President of the Susan and Charles Berghoff Foundation, a nonprofit organization that provides dementia & brain health education, funds dementia research, and hosts in-person and online support groups for caregivers who provide care for a family member with dementia. Email robin@berghoff-foundation.org or visit www.berghoff-foundation.org.