I met Brenda when she decided to seek hospice care. In addition to kidney failure, she had numerous ailments including painful, golf-ball-sized sores throughout her body. She was paralyzed from the waist down, and her swollen body, yellowish skin, and sunken eyes spoke of her suffering, yet she greeted me with a warm smile.
After nine years of dialysis treatments, Brenda was fully aware that she was steadily losing ground. Despite the disapproval of her two adult daughters, she did something most unusual in the American medical system: she took charge of her own death. She informed her doctor that she'd decided to stop dialysis and all other tests and treatments and that she wanted hospice care.
Brenda knew that her decision was a death sentence. Without dialysis, patients usually die within days to weeks, depending on the amount of kidney function left and their overall medical condition. Despite the fact that she had just completed her final dialysis treatment, Brenda seemed relieved. "I'm tired of being tired; I'm tired of treatments that no longer help me; I'm tired of living," she explained.
As we spoke, it was clear to me that this courageous woman had a firm grasp on the realities of her situation, so I asked, "Have you made funeral arrangements?"
"No, but I need to. My two girls don't want to talk about it. Can you help me?"
"Ask them to visit tomorrow; I'll stop by and help start the conversation."
Brenda nodded, grateful to find assistance in addressing the subject her daughters refused to broach.
The next day Vicki and Annie, tense middle-aged women, greeted me politely. After the introductions, Vicki winced and Annie looked away when I said, "Your mother asked me to be here today. May I have your permission to discuss funeral arrangements?" No response.
"Go ahead, Susan." Brenda prompted.
What follows is most of what I said, not only to Brenda's daughters, but to many other hospice patients and their families.
"It may be difficult to discuss funeral arrangements before someone dies, but it is important to do so for lots of reasons. Because she chose to stop dialysis, your mother will die soon. She will likely become increasingly groggy, then unresponsive and unable to communicate her wishes to you. That's why it's important to talk now.
"The moment of death is the worst time to begin making funeral arrangements. When your mother dies, you will enter a highly emotional space at a time when you need to come together and support one another. That's no time to decide on the type and cost of a funeral.
"When someone dies in a nursing home, the staff will ask you what plans you've made to remove the body. That call could come in the middle of the night. Right now, right here, you have the perfect opportunity for a conversation so you may listen to your mother's wishes, offer her suggestions, and make decisions together. If you do the work now, you will not agonize later. A single telephone call can get your arrangements under way." More silence.
I tried another approach: "Brenda, have you decided whether you want a burial or cremation?"
Annie, the younger daughter, started to cry. Vicki, the elder, cleared her throat and said, "In our family, the tradition is--"
Brenda raised one finger, wagged it, and said, "To hell with tradition! Annie, stop your wailing. Vicki, get your sister a tissue.
"Listen up, girls. It's a tradition in our family to wear your Sunday best at your own funeral. Not me. I want to be buried in that red satin kimono your father brought back from Japan.
"Buy the least expensive wooden casket. Use the same funeral home we chose for your father. I want to be buried next to him. Don't invite Aunt Sadie. She'll faint and steal the show. Everything else is up to you.
"That's it girls. Now order that pizza they wouldn't let me have while I was on dialysis. Extra pepperoni. Let's enjoy every minute we have left together."
About that time I slipped away.
The more decisions made before death, the less pressure survivors feel afterwards. Brenda understood that informing her daughters of her wishes would protect them from spending beyond their means out of a sense of obligation or guilt, or fear of being thought of as cheap. Brenda wanted a promise that her daughters would stick to her plans and avoid spending money that could go towards her grandchildren's education. Before leaving that day, they gave her that assurance.
Brenda died peacefully six days later with Vicki holding one hand and Annie the other. At the funeral, they told me they found great comfort in knowing that their mother's wishes were honored.
As difficult as it may be to plan ahead for the death of a loved one, often the bereavement time is easier for those who do. Also, no matter how much preparation takes place, it is normal to feel some regrets after death: I could have done more. I should have done more. In time, such feelings usually fade in the realization that you did the best you could.
November is National Hospice and Palliative Care Month. For more information about hospice see the National Hospice and Palliative Care Organization website http://www.caringinfo.org.