I’m republishing part of a piece I wrote last year because it underlines a story in this weekend’s print edition of WNY Refresh. Also see some links below to other related stories about end-of-life preparations and discussions. Maybe you don’t want to talk about them on Christmas Day – though some might see the poignancy in terms of what will be celebrated – but the next two or three weeks are a reasonable time to talk about matters that may be difficult, but among the most meaningful discussions we may have with our loved ones.
When it comes to death, we spend most of our time in denial.
How else would we get through our days?
That’s why a roomful of about 80 reporters got a jolt during a panel discussion during a recent Association of Health Care Journalists conference in Denver. Session leader Dr. Joanne Lynn, director of the Alarum Institute, asked how we journalists would like to die:
Cancer? Four people raised their hands.
Organ failure? A few more hands went up, slowly.
Frailty – prolonged dwindling – was our last choice. Let’s just say the hand-raising across the room was less than enthusiastic.
Some of us will die in tragic circumstances. About 10 percent will die from cancer, at an average age in our mid-60s, Lynn said. About 15 percent will die from congestive heart failure or other organ malfunction, at an average age of 75.
Roughly three in four will die from frailty – in our late 70s or beyond – due to a combination of chronic conditions, Lynn said. On average, we will live three years in need of round-the-clock care, most likely suffering with dementia along with multiple other physical and mental health challenges.
"There is death in store for each of us," Lynn told the audience.
Ignorance of death may be blissful, but it does ratchet up the emotional intensity in even the most level-headed and understanding of families. Most of us don’t live in one of those.
That’s why Sophie Bomba backed up her daughter, Patricia, a geriatric doctor, on a Thanksgiving Day about two decades ago, and insisted the family talk about their final wishes – then and there, and every Thanksgiving going forward.
Dr. Bomba, subject of an “In the Field” feature in WNY Refresh last year, encourages everyone reading this to visit a website she helped put together, and helps run – CompassionAndSupport.org – to help your family start laying the foundation for the inevitable in a more thoughtful way.
Author and columnist Ellen Goodman started The Conversation Project after the death of her mother and spoke about it last year in Buffalo. Read my story here.
Both CompassionAndSupport.org and theconversationproject.org include step-by-step advice about how families can have these conversations, as well as links that can be used to help prepare some of the important documents that may become so important in a crisis.
There’s actually a National Healthcare Decisions Day in April, in which Americans are encouraged to create advance care plans so that their family members and close friends aren’t in the dark if called upon to help carry out final wishes for loved ones.
Bomba encourages families to talk about end-of-life care at least once every year.
Peter Kates, Univera Healthcare spokesman in Buffalo, understands why.
"You have those death bed conversations with a loved one. I’ve had a few,” he said. “You always come away with, ‘Gee, I wish we had talked that openly and honestly before this moment.' That Thanksgiving conversation, is it preferable to have that discussion in an everyday setting than in a farewell setting?"
Bomba said those conversations – along with a health care proxy and, for some in their waning years, a Medical Orders for Life Sustaining Treatment, or MOLST, form – “helps people to close their life.”
“One of the things that’s so important – and I’ve seen it over and over – is that people need to know that their life had meaning, that they did something, that they can be at peace, and frankly that’s what these conversations do. It allows people time to say what they feel and what they want. When people don’t have that opportunity, they struggle."
The conversations you have with family and loved ones help clarify things, Bomba explained.
As we age, the MOLST – a more specific “do not resuscitate” instruction guide – will become an important tool for many of us.
Who needs one?
- People who are in a nursing home.
- People who would be in a nursing home but are getting services at home.
- A provider or doctor wouldn’t be surprised if that person were to die in the next year;
- And people of advanced age who say, “There are things I want and don’t want if I get really sick and need to be hospitalized.”
Bomba speaks from experience. After years of Thanksgiving talk, her mother needed a MOLST form readied about a decade ago.
"She came to live with us 15 months before she died,” Bomba said. "She was having trouble repeating things and was staying with my sister.
"Her doctor knew MOLST and my mom had had so many advance care discussions, she had strong feelings about what she wanted and didn’t want.
The doc said, ‘I’d like to talk with you about this. What’s important to you now?’ And she said, ‘Frankly, not being here in Rochester, because what’s most important to me is my grandkids and my ability to see my grandchildren as long as I’m able to physically, and I know them, and can interact and be engaged in their lives.
“With that in mind, we went back through the MOLST.”
MOLST is a set of medical orders signed by your primary care doctor and rechecked during doctor visits. In Bomba’s house, her mother’s form was on the refrigerator, or available in someone's purse in case of an emergency. Emergency Medical Technicians are trained to look for the forms, which are pink so they stand out.
Bomba said there are four key questions the form aims to answer for each of us:
How will treatment make a difference?
How is it going to help?
How is it going to hurt?
Is there hope of getting better, and if there is hope, what’s life going to be like?’
The answers to those questions can then help you and your health care proxy decide what life-sustaining treatments you’d like and under what circumstances you would prefer a natural death.
“If my mom went out with us for dinner, we’d bring it with us,” Bomba said.
Sophie "Babci" Bomba got to see Bomba’s daughter, Stephanie Huston, graduate from the University at Virginia Medical School in May 2007 and got to see another granddaughter married in Pennsylvania later that year. She died that December, at age 82.
Who should start a discussion about how to handle these arrangements: parents, spouses or kids?
“In terms doing advance care planning, all of us need to do it and it really is through a family dynamic,” Bomba said. “When you think about family, it’s not just biological family. Some people have outlived their biological family. Family for them may be close friends. ... If you think, ‘Who’s going to be at my bedside if something happens to me?’ those are the people you need to bring together for this discussion.”