DEAR MAYO CLINIC: My 65 year-old-mother was diagnosed recently with Parkinson’s disease. A friend mentioned that we should see a palliative care doctor to develop a care plan. I don’t think my mother is dying anytime soon. Can you explain palliative care and why we might need a consultation?
ANSWER: I am sorry to hear about your mother’s diagnosis. It can be challenging to have a loved one with a neurodegenerative disease like Parkinson’s disease, but it is wonderful that she has you to assist her.
Palliative care is a specialty that focuses on improving quality of life for people who have chronic, serious or advanced medical conditions. It can benefit patients and families at any point along the disease course, even at the time of diagnosis.
While you mentioned that your mother is not dying anytime soon, there is a role for palliative care throughout the disease trajectory, from the time of diagnosis until the end of life. Palliative care is not synonymous with hospice care, which is specialized care for people who are near the end of their lives.
A palliative care consult focuses on the physical, spiritual, social and psychological aspects of care for the patient, and his or her caregiver. The palliative care team may include a combination of physicians, nurses, advanced-practice providers, chaplains, social workers, therapists and pharmacists. The team assesses and manages symptoms, supports caregivers, helps establish care goals, and discusses advance-care planning.
Suboptimal control of symptoms can negatively affect quality of life. Thus, the palliative care provider aims 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 care team also cares for caregivers. Caregiver stress can negatively affect patients, so the team tries to identify and alleviate caregiver stressors and burdens. This may include making recommendations for additional assistance in the home, or increasing support services, such as physical or occupational therapy, or respite care.
The team inquires about the patient’s medical, personal and family goals. For instance, one person may want to plant and tend to a garden, and another patient may want to travel to see family members. The role of the palliative team is to help patients meet their goals and ensure that their medical goals align with available therapeutic options.
Advance-care planning is the process of discussing one’s preferences for care when they are at the end of his or her life. It is a topic that some people are hesitant to discuss, but it is important, particularly when people have a serious or advanced medical condition. Making decisions in advance of when they are needed guides family members and the medical team.
In addition to discussion, patients are encouraged to complete an advance directive. The advance directive includes two parts: designation of a health care surrogate and a living will.
A health care surrogate is a person who would help make medical decisions if one is unable to make his or her own decisions. This person can be anyone who would feel comfortable carrying out the person’s wishes, such as a family member, friend or co-worker.
The living will is a document that outlines one’s wishes for life-prolonging care at the end of life. Another topic that may be covered is whether a person would want CPR when his or her heart stops or when he or she stops breathing, or if he or she would want to allow for a natural death. The latter option is often referred to as a do-not-resuscitate order, or DNR.
Palliative care is a complementary service to a person’s general or specialty medical care, and it can be provided while people are receiving medical therapies, chemotherapy, dialysis, surgical procedures or other life-prolonging therapies. People often appreciate the additional support that the palliative care team provides. — Dr. Maisha Robinson, Neurology, Mayo Clinic, Jacksonville, Florida