End-of-Life Planning: Bravely Beginning the Conversation
As a medical social worker in an acute care hospital, it was commonly my role to talk to families about advance directives and end of life planning. The crisis of a hospitalization often prompted individuals and families to think about their own mortality including what medical interventions they would want to be done or would not want to be done in the future. While this is a topic most of us would rather avoid, it is incredibly important, especially for those suffering from Parkinson's disease.
He asked me how to bring up death with his mom
Early one morning I was asked by a nurse to meet with a patient’s son. Arriving in the room, he quickly asked to meet outside the earshot of his mother. Once we arrived in the family room, he shared that his mother, who was admitted after a fall, had been suffering from Parkinson's for a few years now. He went on to discuss how his mother had never been one to talk about death or medical decisions. While he respected her values, he was worried about the future. He was well aware of the stages of Parkinson’s disease and the associated cognitive decline leading to the possibility of him, as an only child, becoming her medical decision maker in the future. He wanted to make sure he could speak accurately for her wishes but was not sure how to bring up the topic.
In considering how to respond, I reflected upon how, for someone who had not been raised in a culture where death was regularly discussed, it was brave to be bringing up the conversation now. I offered this observation to the son as well as validation for the fears and anxiety about an uncertain future. We spoke further and considered how to proceed.
The Conversation Project & Five Wishes
Stepping away for a moment, I retrieved information about the Conversation Project, an initiative developed to provide support for families and individuals seeking assistance in end of life planning discussions.1 Additionally, I printed out the free legal document that is used in my state for advance directives (every state differs). Lastly, I printed out information for the Five Wishes, an alternative to the standard form that is geared towards addressing the spiritual, emotional, and practical aspects of end of life planning in an easy to understand document.2
Returning to the room, I reviewed with the son the various ways to approach the conversation including using the aforementioned resources. Appreciating that he knew his mother best, I valued his decision to review the information, start the conversation at home, and discuss further questions with their outpatient neurologist in their upcoming appointment. He shared his mother had always had a good relationship with him and he believed she would be more able to process the conversation once she was out of the hospital. Being familiar with the physician and his multidisciplinary practice, I encouraged him also to reach out to the medical social worker for further support and questions.
What I learned in the process
I share this story to illustrate a few points:
- Start: Starting the conversation can be HARD! In my experience, each patient and family ultimately proceeds with a different approach right for them and their family culture. While it matters that the conversation is done with sensitivity and care, it matters more that it occurs.
- Use Resources: There is no need to reinvent the wheel (unless you desire to do so!) In my experience, The Conversation Project1 and Five Wishes2 are two comprehensive and sensitive resources that can be started in the medical or home environment.
- Reach out: It can be quite beneficial to reach out to trusted others such as healthcare providers for assistance. They will likely be pleased you are open to the discussion and willing to provide support.
Oftentimes, taking that first step can be the most difficult. While it is common to have fears and the urge to avoid, it is more beneficial long-term to navigate through. Remember this is not an area, as either a patient or caregiver, that you have to approach alone. Once it is started, take a moment to give yourself credit for addressing this difficult and important topic.
Do you participate in a support group for PD?