Palliative Care and End-of-Life Planning
Palliative care is a specialized field that aims to alleviate symptoms and maximize the patient’s quality of life. Treatment of Parkinson’s disease (PD) in the early stages is very different from the later stages of the disease. While palliative care is focused on the management of motor symptoms in the early stages, in the later stages of the disease, palliative care shifts to focusing on treating the non-motor symptoms. Unfortunately, there are few therapeutic options to treat patients with PD in the end stages of the disease, and palliative care aims to ease symptoms like pain and depression to maximize the person's quality of life. In addition, palliative care improves the lives of people with PD and their families by providing comfort and support. Palliative care encompasses physical symptoms, psychosocial distress, spiritual distress, and caregiver distress. Palliative care is often provided by a number of healthcare professionals, often working as part of a multidisciplinary team. The team may include doctors, nurses, dietitians, pharmacists, psychologists, and social workers.1
Components of end-of-life planning
End-of-life planning encompasses more than just the medical care. In addition to making decisions about healthcare, end of life planning can include legal and financial decision-making, funeral and memorial planning, and determining what legacy someone wants to leave for others, or how they want to be remembered. End of life planning can be difficult for the one dying and for their loved ones. However, by undertaking the steps to plan for what one wants, the person who is dying gets to shape the ending of their story. By making these decisions ahead of time, the person who is dying can provide helpful information for their families and friends, as well as ensure their individual values are reflected in these decisions.2,3
Advance directives are written instructions on the type of care that is wanted if someone is critically ill or dying. When someone is too ill or hurt to express their wishes, an advance directive provides a legal document that specifies the person’s wishes. Also called a living will, it often includes instructions on the use of machines that may prolong life (such as dialysis or breathing machines), the use of resuscitation if breathing or heartbeat stops, tube feeding, and/or organ or tissue donation. Another document that can be helpful is a durable power of attorney for health care, which chooses a person to be a health care proxy, another person to make decisions if the patient cannot.3,4
Questions to consider
Conversations about death and dying can be difficult, but understanding the patient’s wishes and priorities allow the patient to have control over choices made at end of life. Some questions that can help shape a discussion include:
- What is your understanding of the situation and its potential outcomes?
- What are your biggest fears and concerns? What are your hopes?
- What goals are most important to you?
- What trade-offs are you willing to make, and what ones are you not?
- What is the course of action that best serves this understanding?2
For those who are sick and nearing the end of life, the priorities go beyond just being safe and living longer. The chance to shape one’s story is essential to sustaining meaning in life.
- To share memories
- To pass on wisdoms and keepsakes
- To settle relationships
- To establish their legacies
- To make peace with God (or their personal religious beliefs)
- To ensure that those they leave behind will be okay2