(Helen Bauer is a certified hospice and palliative nurse currently working as a hospice consultant and founder of The Heart of Hospice, a group of projects designed to educate, encourage, and support anyone who needs information about end-of-life care. Its mission is to enhance the hospice experience for patients, caregivers, volunteers, and hospice professionals. — Jay Niver, Editor)
My surrogate story started like so many others. A worrisome phone call about a sick friend in the emergency room. In the car, on the way to the hospital, I reviewed the packet of papers she had given to us several years before.
Durable Power of Attorney – both my husband and me. Medical Power of Attorney – me. No alternate agent, just me.
I was startled to read this and even more concerned to find our friend, Betty, incoherent from sepsis when we arrived at the hospital. Betty had been a part of my husband’s family for over 30 years, one of those “honorary aunts” who had been with us for all the birthday parties and holiday celebrations. She and I had always been friendly, but had never had serious conversations about dying or end-of-life wishes.
Betty had been undergoing treatment for cancer. She wasn’t responding well, and had recently been residing in a rehab facility. The goal was strengthening, to enable her to return to living independently in her own home. There were reports of depression, unwilling-ness to participate in her therapy regimen, and withdrawal from interacting with friends who would come to visit. An infection had gotten out of control, and her blood sugars were off the charts.
I did the only thing I could think to do: I kicked into nurse mode. Speaking with the hospital staff gave me a pretty good understanding of Betty’s immediate medical needs. She was admitted into ICU to receive close monitoring and IV antibiotics. Even with all the treatment, her condition deteriorated.
They told me she was dying. “Moribund” was the word the doctor used. Even he couldn’t have a helpful discussion with me about my new-found caregiving responsibilities. Thank goodness for my hospice training. When I mentioned the possibility of hospice care, the doctor immediately gave his stamp of approval and signed off. I sat with the hospice rep, signing papers to elect hospice care on Betty’s behalf. The whole situation was a scramble to understand her condition and determine precisely for what I was responsible.
It was evident that Betty could no longer make any decisions. When she was alert enough to speak with me, she asked for her mother, who had died years ago. It was heartbreaking to hear.
One of the biggest blessings of this unexpected caregiving situation was the inpatient hospice facility. Betty was placed there for a short-term stay, still very confused and unable to help me make decisions. Along with several of her friends, my husband and I went on a scavenger hunt for vital items I needed to pay her bills, talk with her insurance company, and consult with someone at the bank.
Because Betty had no close family, I was charged with making funeral arrangements. Her distant cousin went with me, but neither of us had ever heard Betty discuss any end-of-life wishes. We were flying blind as we made decision after decision, all based on what we knew about how Betty had lived her life.
I found myself short-tempered and exhausted after about a week. I was sad about Betty’s condition, knowing it was critical. The additional emotion I did not expect was anger. I was so mad that she had put me in this position! How could Betty expect me to make good decisions for her when she never told me what she wanted? Where did she want to live her last days? Was there any money for a caregiving system? Yes, she had a plot at the cemetery where her parents were buried, but how was a funeral supposed to look?
Guilt also overwhelmed me. What kind of hospice nurse was I that Betty never felt comfortable enough to talk with me about these all-important decisions?
Sleep deprivation amplified every emotion and wore me down quickly.
As a hospice nurse, I know from years of experience that the aggravation of my surrogate role could have been avoided. If Betty had sat down with me and had conversations (not just one, because that never gets it all done) about her advance care plans, things would have been different. I would have listened. We would have been equipped to provide the type of care she deserved and wanted to have.
We placed Betty in a personal-care home with a warm, loving environment. She was surrounded by items from her home she could recognize. She received loving attention from the small staff.
When her condition declined and death was imminent, they took Betty back to the hospice facility. My husband was with her the night she died, playing Sinatra softly for her as she transitioned out of this life. It was what hospice professionals call a good death, one that was comfortable and peaceful.
I’m grateful for my experience with Betty, honored that she trusted me to make such personal decisions for her when she was most vulnerable. I do realize, however, that my surrogate story is a cautionary tale. Without my hospice training and connections in the caregiving community, we would have been floundering as we tried to determine how best to care for my friend.
Having no Advance Directives or discussions complicates end-of-life care. It’s easy to make mistakes; provide unwanted, unnecessary, and expensive medical attention.
Betty is buried very close to her parents. She always liked yellow roses, so we placed them on her casket. Her close group of retired teacher friends gathered to grieve. The eulogy described her love for her dog, a years-long devotion to teaching, and a passion for travel.
While Betty never told me what she wanted for her funeral, we made it all about her – intimate, warm, and friendly, and remembering Betty in the best way possible.
I hope many people are moved by your article to provide their future care-givers with the information you were lacking, and realize the burden placed if they don’t. People just don’t want to address it, and the future care-givers may be uncomfortable pushing to get the information. I keep dropping hints to my 84 year old dear friend who is in very poor health, that he needs to get his son on board with what he wants, but he does not want to discuss it, being a retired Marine and still of a mindset to fight to the very end with no preparation for “failure.” His son does not realize what is likely to come. In the end, they will just trust the medical system to do what’s best, and we know how that is likely to turn out. I think you did a marvelous job; a peaceful death is what we all hope to achieve.
This is indeed a cautionary tale and there are lessons to be learned. For those of us involved with end of life issues, my experience is that we must generally assume that most folks don’t really understand how advance care planning works. Further, many are reluctant to really think through their end of life wishes and talk about them with loved ones…even with their designated health care decision-maker, unless personally motivated or guided to do so.
If someone knowledgable is asked and is considering becoming a medical power of attorney, it seems incumbent upon them to initiate the conversations, before agreeing to serve. Particularly if the requesting person has a serious medical condition like cancer. Suggesting a POLST discussion would also seem appropriate with the patient, their provider and perhaps the surrogate. Particularly for those of us with the knowledge and skills, part of the job is to help the person think through their values and their end of life options while they are reasonably healthy and certainly well before they lose capacity.
The “anger” you felt about Aunt Betty’s failures is understandable under the circumstances, but seems a bit misplaced. Taking on proxy responsibilities is a serious obligation and we all have a part to play to ensure that it goes as smoothly and effectively as possible. The good news is that it seems like you did everything possible to bring about a positive outcome…and that Betty was well served. Thanks for sharing.