This week’s guest blogger is Lisa Pahl, LCSW, co-creator of The Death Deck!
Lisa Pahl, LCSW, co-creator of The Death Deck
Working as a hospice social worker, one of my roles is to help the patient (and their family) prepare for their death. While an individual is eligible for hospice with a terminal diagnosis and prognosis of six months or less, they often come on to hospice in the final days to weeks of their lives.
This does not give us much time to help prepare all those involved, especially as the focus is also spent on managing patient symptoms and creating a caregiving plan.
Recently, I was assigned as the social worker to a man in his early 60’s. He had stage IV cancer that he was in treatment for during the last five years of his life.
The nurse and I arrived to the home and were greeted by his very loving and emotional wife. The patient was experiencing pain and shortness of breath. The nurse got to work addressing his physical symptoms while I began supporting his wife.
Towards the end of the visit, I approached the topic of final arrangements. The wife requested that I not speak to the patient about this topic, as she felt it would distress him to talk about such morbid things.
This is not unusual.
I typically take the lead from the patient and family in initiating these conversations. If the patient is open and direct when speaking of their disease and prognosis, then I will usually ask them directly if they have made any arrangements for after their death.
If the patient is reluctant to come on to hospice, if the family appears somewhat protective of the patient, or if I am not yet sure of how they will respond, then I will ask a family member in private if final arrangements have been discussed with the patient. I attempt to find the balance between meeting the family where they are at in their acceptance of the prognosis, and also ensuring that they are prepared for their loved one’s passing.
In this case, I encouraged the wife to speak to her husband about his wishes and noted that I would address this topic again during the next visit.
When I returned to the home just one week later, the patient was experiencing terminal agitation and appeared to be actively dying. After contacting the nurse to come immediately and assisting the wife in getting the patient more comfortable, the wife began sharing with me that she had not spoken to him about his wishes.
Unfortunately, not having had this discussion with him, she was now experiencing feelings of anxiety, uncertainty, and fear.
Through multiple phone calls to family members and guidance by me, she was able to make a decision and select a local mortuary. However, she continued to lack a sense of confidence in the plans that she was making.
It’s very hard to honor someone’s wishes when you don’t know what those wishes are.
I have witnessed countless similar situations as a hospice and ER social worker. This lack of preparedness and general discomfort that people have in bringing up death and dying is why my business partner and I created The Death Deck: a card game that encourages conversations with friends and loved ones about a wide range of end of life topics. Using humor and a casual tone, the game engages people in a less threatening and, at times, even fun way while exploring their thoughts on life and death.
The end of your life is not when you want to start these important conversations. Our goal with The Death Deck is to get all of us talking about our wishes far before the situation that my patient and his wife found themselves in. In doing so, we can give our family members the confidence that they know our wishes well and can the steps to honor those wishes.