You die in the way that you live: reflections on being mean and unhappy right to the bitter end

2013
Wallace, Rebecca

Ruth is a bit of an infamous patient in our family practice. She has been receiving palliative home care visits for end stage heart failure for the last four years now. But it is not her staying power that makes her so legendary. It is her attitude. Ruth seems to dislike and be unhappy with everyone, regardless of their care for her. This includes her family, advocates, friends, and healthcare providers. In many ways at the tender age of 72, she is still addicted to the drama.

Often I think we idolize the dying process in elderly palliative patients. They have lived full lives and, as family physicians, we are helping them die in a peaceful dignified and loving way. Luckily, this is often the reality and it is a privilege to walk the last legs of life's journey with these people. But sometimes, there are people who have lived their whole lives being mad at the world and just because they’re dying, doesn't mean they're going to do anything different.

The point at which Ruth and I met was when she had had a sharp change in her disease trajectory, and was now completely bed bound and staunchly resistant to moving into a nursing home. She had no family members around to care for her in any capacity.

At the beginning of our home visits, I felt quite shaken and moved by Ruth's situation. "How is it that a woman can have 4 children and 12 grandchildren, all of whom live within an hour's drive, and still no one to talk to her or take care of her?" I wondered. She would tell stories of her family's betrayal towards her and how no one, not even her granddaughter, returned her calls.

It was at a family meeting when l finally began to understand the other side of the story. Along with many members of the healthcare team, the only family present was one of her daughters. I listened in awe as Ruth called her daughter fat and useless, then broke into tears as she was so tired of being "emotionally neglected" by her daughter. Later, the daughter told me that she would call family members during the night just to tell them what terrible people they were for not visiting her. She said that at first they would answer, worried that Ruth had fallen or needed help at 4 am. But after a particularly eventful phone call to a granddaughter, everyone started to screen their phone calls and did not pick up for Ruth, no matter what the hour.

I imagine that for the first year after Ruth had been told that she would be dying from heart failure, her family rallied around her to put past grievances aside and to make amends so she could pass in peace. Maybe even some very special and patient relatives stuck around for the second or third year. But by the time we had met it was four years on. I'm fairly certain much of her family was convinced that Ruth, in fact, would never die and decided to preserve their own sanity and emotional well being by making the difficult decision not to engage with her. Ruth had only one daughter who she was still on speaking terms with.

With my keen fresh new resident energy, I tried to remedy the family situation and improve interactions. I tried listening. I tried thoughtful, gentle, probing questions, hoping that this poor woman would finally realize that this was her last chance to move forward in her relationships. But every time I thought that we had made a breakthrough, I would find out about another "incident". Once, in a fit of rage, she had submerged her daughter's purse in the kitchen sink, all while still connected to an oxygen tank. She called 911 often. It was hard to tell sometimes if I was her best friend or long-time nemesis, as her attitudes and interactions changed with me depending on who was in the room with us.

One of the nurse practitioners on our team, who had been working with her since she had first become a patient, had one of the most interesting and complex healthcare provider-patient relationships. Ruth loved to hate, but like all of us she needed people in her life, and the only people who were obligated to stick around were her healthcare providers. She would say the most mean-spirited things to the nurse practitioner, but would not make any major life decision without his approval. Ruth needed him and she respected him. She just didn't have the ability to realize that, let alone tell him.

It was hard to accept that no matter how often people reached out or tried to help her, she was never going to change. I was expecting an end of life epiphany; a last chance to make things right that never came. The reality is that when you live your entire life like the whole world is out to get you, you're not going to up and change just because you're dying. I'm sure there are complex social reasons as to why Ruth turned out Ruth. But in the end she built her entire life on being the victim and thinking that others were constantly letting her down. If you took that from her, what was left?

I learned a lot from Ruth. I learned from the nurse practitioner that continued to provide for Ruth with professionalism and compassion, despite her absolute inability to thank or recognize him. I learned the importance of love, patience, family, and to never take our friends for granted. Most importantly, I learned that you die in the way that you lived. If I am lucky enough to have time to say goodbye to my loved ones before I go, I hope that I will have no major fences to mend or grand apologies that will need to be said. Our best hope is to be kind and to love every day, as it is in our regular, insignificant daily interactions that we become the people we are.

Ruth finally did pass. About a year after we met, Ruth moved into a palliative care facility after she declined sharply once again. For the first month, we received frequent calls from the nurses who were convinced she was "approaching delirium“ because her personality was changing abruptly from moment to moment, going from sweet to "deliriously" vindictive in a second. The calls teetered out as the nurses began to realize that these were not medically induced personality changes, but rather just Ruth herself. Then, one uneventful evening, she passed on. I hope she found peace in her own way on the other side. Or maybe she's watching us from above, smiling and laughing as she watches us blunder our way through our lives, still addicted to the drama.

Theme: Death and Dying | Décès et le mourir
Theme: Family | Famille
Theme: Patients | Patients
Theme: Relationships | Relations
Theme: Teaching and Learning | Enseignement et apprentissage

Stories in Family Medicine | Récits en médecine familiale [Internet] Mississauga ON: College of Family Physicians of Canada. 2008 --.

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