Many people have commented that having a conversation about care choices they want or don’t want may be too difficult or too emotional. They would rather just deal with things “when the time comes”. In my experience as a hospice nurse, I have had hundreds of these conversations with patients and their families when this unexpected/unwanted time came. These conversations – after a terminal diagnosis was learned, or they heard the phrase “nothing more we can do” – are the toughest conversations for people to have.
They often haven’t had the benefit of earlier care discussions or “what-if” conversations that might have aided them when I walk in the door for a hospice admission. At this moment in time, patients and families must grapple not only with declining physical and cognitive health, but also with changing roles, an impending death, anticipatory grief, emotional upheaval, and maybe even unresolved issues. Because hospice admissions occur most commonly across the U.S. within only a few weeks of death, patients and families are thrust into having these conversations.
In all the years that I have had these conversations with people, I have been blessed with the repeated gift of sharing the right words at the right time, as evidenced by some of the cards and notes I received from families who didn’t want to have these conversations but were nevertheless forced by circumstances to confront the situation. Here are some excerpts:
- Thank you for your concern and compassion to our father. You helped so much in his journey.
- We are forever grateful that you helped her pass from this life to Heaven with love and dignity.
- It was extremely difficult to watch her “fade away”, but your presence and advice in caring for her was deeply appreciated.
- We greatly appreciated the effort you made to locate our brother. Because of you, he was able to spend time with the family and attend the funeral.
- She came to think of you as a friend and would look forward to your visits with her.
- You called my sister that night to come right away. My brother and I came that night also. We are very thankful that we could all be with Mom during her final days. I had been worried that she would slip away without my having the chance to say goodbye. My sister, brother and I were able to help Dad with Mom and we were all able to say our goodbyes.
- Dad was our hero. He showed us how to die with faith and courage. We thank you for the dignity you gave to his final hours.
- We were and are deeply thankful for your prompt intervention; it made the difference between a night of suffering for my mother and anxiety for us, and that of calmness and rest.
- We would have been lost without your honesty and guidance. The respect and compassion you showed Mom was something I hadn’t considered. My main concern was her comfort, and we got so much more.
My purpose in sharing these personal notes is to reinforce the importance of earlier conversations and planning for the kind of care you (or your loved ones) want “when the time comes”.
One card I received included scripture from Colossians 3:12, 14, which reads: “Put on a heart of compassion, kindness, humility, gentleness and patience. Beyond all these things put on love, which is the perfect bond of unity.” This is how we approach conversations through Caring Choices. Talking about death is difficult, but it is necessary to assure that we, and those we love, will have the kinds of experiences like the families who wrote the notes above.
@ 2013 Caring Choices