What’s palliative care and who wants it?

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DEAR MAYO CLINIC: My 65 year old mother was recently diagnosed with Parkinson's. A friend mentioned that we should see a palliative care doctor to develop a care plan. I don't think my mother will die anytime soon. Can you explain palliative care and why we might need advice?

ANSWER: I'm sorry to hear about your mother's diagnosis. It can be difficult to have a loved one with a neurodegenerative condition like Parkinson's disease, but it's wonderful that they have you to help them.

Palliative care is a specialty that focuses on improving the quality of life for people with chronic, severe, or advanced illnesses. It can benefit patients and families at any point in the disease process, including at the time of diagnosis.

While you mentioned that your mother doesn't die anytime soon, palliative care plays a role throughout the course of the disease from time of diagnosis to the end of life. Palliative care is not synonymous with hospice care, specialized care for people who are about to die.

A Palliative Care Consult concentrates on the physical, spiritual, social and psychological aspects of caring for the patient and their caregiver. The palliative care team can consist of a combination of doctors, nurses, advanced practice providers, clergy, social workers, therapists and pharmacists. The team evaluates and manages symptoms, supports caregivers, helps set care goals, and discusses predictive care planning.

Suboptimal control of symptoms can affect quality of life. Therefore, the palliative care provider wants to maximize function and quality of life by reviewing symptoms and offering options. The types of symptoms that are assessed include pain, nausea, anxiety, depression, constipation, diarrhea, fatigue, and insomnia.

The palliative team also takes care of the nursing staff. Caregiver stress can adversely affect patients. Therefore, the team tries to identify and alleviate stress factors and burdens on the caregiver. This may include recommendations for additional support at home or increasing support services such as physical therapy, occupational therapy, or relief care.

The team inquires about the patient's medical, personal, and family goals. For example, one person may want to plant and care for a garden, and another patient may want to travel to see family members. The role of the palliative care team is to help patients achieve their goals and to ensure that their medical goals are in line with the therapeutic options available.

Planning ahead is the process of discussing preferences for end-of-life care. It's a topic that some people are reluctant to discuss, but it's important, especially when people have a serious or advanced illness. Making decisions in advance, when needed, guides family members and the medical team.

In addition to the discussion, patients are asked to make an advance directive. The advance directive consists of two parts: the designation of a replacement for the healthcare system and a living will.

A healthcare substitute is someone who would help with medical decisions when unable to make your own decisions. This person can be anyone who feels comfortable fulfilling the person's desires, such as: B. a family member, friend, or co-worker.

The living will is a document that outlines the desires for life-extending care at the end of life. Another topic that can be addressed is whether a person wants CPR when their heart stops or when they stop breathing or when they want to allow natural death. The latter option is often referred to as the Do-not-Resuscitate Order (DNR).

Palliative care is an adjunct to general or specific medical care for a person and can be offered while people are receiving medical therapy, chemotherapy, dialysis, surgery, or other life-extending therapies. People often appreciate the extra support that the palliative care team provides.

– Dr. Maisha Robinson, Neurology, Mayo Clinic, Jacksonville, Florida

Outpatient palliative care improves Parkinson's outcomes

© 2020 Mayo Foundation for Medical Education and Research
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