When medical wishes are respected

In 2005, my husband and I bought a small farmhouse in northern New England next door to Tom and Sally.

They were in their early seventies, married nearly fifty years, with a large family. Tom’s grandfather had built a farmhouse in 1900 on the family’s small pig farm. In the 1970s, Tom and Sally had parceled off the land and built a modern house for themselves, a stone’s throw from the old farmhouse that eventually became ours.

Tom and Sally have been great neighbors — private people, and the salt of the earth. In winter, they’d snowblow our driveway, despite being our seniors by thirty years. Once, years back, when our dog was gnawing a frozen squirrel and I was freaking out, Tom calmly took the squirrel away by making a game of it (the “squirrelcicle incident,” as it’s know in our household). On Halloween, our kids would trick-or-treat at their house first; at Christmas, they’d make Tom and Sally peppermint bark, and we would bring it over and admire their ceramic Christmas village, laid out on card tables.

These were the only times we would visit their home. Our other conversations were reserved for the driveway, where we’d meet when gathering the mail, raking the leaves or putting out the recycling bins. We were grateful to have such good neighbors who watched out for us.

A year ago, Tom was diagnosed with lung cancer. In our driveway conversations, Sally revealed that the cancer was spreading. And she made it clear that Tom wished to avoid ending up in the hospital.

“Daddy wants to die at home,” she said. “If he can go sit in the garden and take his walks, then we’re good.”

Having worked as a medical social worker in hospice and inpatient settings, I know how well hospice does at helping patients like Tom to stay out of the hospital, and so I often broached the idea of hospice care with Sally.

Her response was always the same: “We had that for Tom’s mom, but he’s not ready.”

As the months went by, with no hospice involvement, I gingerly approached Sally about getting Tom a MOLST form so that his wish not to be intubated or resuscitated would be respected. (MOLST, short for Medical Orders for Life-Sustaining Treatment, is a document used to facilitate end-of-life medical decision-making; it’s effective from home to ambulance to hospital.)

She listened and said she would talk with him about it. A few days later, she knocked on our door and asked, “Can you print me one of those forms? I talked with Tom’s doctor, and he said he’d sign it.”

A few weeks later, an ambulance drove down our short, dead-end road and into their driveway.

“Damn, he has a MOLST,” I said cryptically to my husband, then ran out the door.

“He has a MOLST!” I hollered to the emergency medical technician standing in the driveway. Memories crowded my mind: a hospice patient who’d died in the hospital, rather than at home, because a caregiver had panicked and called 911; the many intubated ICU patients who had slid down the slippery slope of interventions.

Sally let me into the house. The lead EMT held Tom’s MOLST in his hands and, thankfully, knew very well what it meant.

Tom’s lungs were filling with fluid, and he was struggling to breathe — a situation that both he and Sally found unbearable. In addition to the cancer, Tom had congestive heart failure and chronic obstructive pulmonary disease; from conversations with his doctors, Sally feared that he might choke to death.

Unfortunately, since hospice wasn’t yet involved in Tom’s care, there were no medicines in the house to ease his symptoms. Tom and Sally agreed that he should go to the hospital, and the lead EMT promised to respect Tom’s MOLST and get it into the right hands.

I realized that he was holding the original; there were no copies. For fear that the form would get lost at the hospital, I took it to our house, and my husband cranked it through our little home-office copier while they loaded Tom into the ambulance.

Two days later, Sally came to tell us that he was home and under hospice care.

“They brought a box of medicines that I can use to help him, so he can stay home,” she said. “He took a shower and shaved and says he feels better. I hope he doesn’t choke; that’s the thing I worry about. The doctors don’t think Daddy will make it through the winter.”

A few days later, on a Sunday at 7:00am, when my kids and I were still in our pajamas, Sally knocked on the door. She was crying.

“I think Daddy is gone, but I’m wondering if you could check,” she said.

I woke my husband, put a sweater on over my pajamas and followed her.

I’m a social worker, not a doctor, so I can’t officially pronounce someone dead. But I have seen what seems like hundreds of people near, at and after their deaths. I knew I could bear that part, and I hoped that Tom’s condition would be obvious.

It was. His face was drawn. His skin was cool. He had no pulse.

“I agree with you. I think he has died,” I told Sally. “I think it would be a good idea to call hospice.”

Standing next to the bed, we hugged briefly, and Sally cried.

“I prayed so much that he wouldn’t struggle, and he did not,” she said. “He didn’t want the kids to come after Friday night. I just laid in bed, and we held hands before he went.”

I realized that I had been invited into the midst of something incredibly intimate. Tom would be at the funeral home by the time his children arrived from around the state.

As I felt his wrist, miming everything I could remember from watching my colleagues and from Hollywood, I wondered if Tom and I had ever touched before. Perhaps we’d shaken hands when my husband and I moved in?

Sally and I hugged some more (had we ever touched before this day?) and she said, “I just want to sit with him a little bit more before I call the hospice and the funeral home and the kids.”

I went home to my husband and children and cried as I talked with them about our kind neighbor’s death.

When I checked back with Sally later that day, the hospice nurse, the funeral home and the family members had come and gone, and she said, “I’m waiting for my friend Molly to come. We’re going to have a few beers together.”

Tom had the elusive good death. He was home, with the woman he loved, in the house they’d built together. His medical treatment had been driven by his wishes, and these were respected by everyone involved. He and Sally had the right resources at the right time, with a sympathetic and supportive physician, a MOLST form that made Tom’s wishes clear, hospice care (although in my view this could have started sooner), and the good fortune to be spared the choking they had feared.

As I have reflected on this death and this intimacy, I have imagined that this is what it used to be like with neighbors — present for one another in birth and in death, not just for the squirrelcicles and Halloween costumes.

And although we all have a strong enough dose of New England reserve not to be overly involved in each other’s lives, it turned out, in the end, that we were close enough.

Kelly McCutcheon Adams is a director, Institute for Healthcare Improvement (IHI), Cambridge, MA. This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

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  • Suzi Q 38

    We recently said “goodbye” to my husband’s 100 year-old plus 6 months great aunt. She was born in 1913, and died in the kitchen of her home.

    She was not alone. She had a home health nurse and a physical therapist with her.

    We nicknamed her “The General,” as she always did things her way.

    She was working long before the Women’s Movement, and did so until she was 85. Consequently, her social security benefit was about $3K a month. She drove her car until she was 99. She still had her driver’s license, but we took it away plus the keys when she couldn’t see well after cataract surgery at 99. She still had all of her original teeth.

    She didn’t have any children, and her husband died 20 years ago.

    The next of kin was an older cousin, who checked in with her daily by phone and ate dinner with her weekly. I would come to visit about once every two or three weeks, until she got sick and needed me more.

    She taught me how to get people to come visit you.

    “If you don’t get a phone call or visit from them, just call them and ask them to come over” she told me. Once at her house, you could pick all the fruits on the trees that were in season, and she paid for lunch.

    She gave a lot of good advice, and her stories were vivid and interesting.

    In December, her body was “giving out,” and she was trying to die.

    After the last visit to the hospital, she told me that she was going home, no further treatment, and never coming back.

    We got nurses for her, and visited more often.
    I took videos of her. My favorite was her advice to my 27 year old son as to how to find a good wife. He was delighted.

    Anyway, I told her to take each day at a time.
    I called all of the relatives and told them the end was possibly near.

    My husband and I added more visits.

    She died in January.

    After I got the phone call from the nurse, I found out that her nephew was with her alone. I called and asked if I could see her one last time.

    She had told me once that she was not afraid of death, as she knew that her husband would come for her.

    I was so happy that she got what she wanted.

  • safetygoal

    That is a beautiful story! We should all be so lucky to die so peacefully surrounded by our loved ones – and to have such a thoughtful, caring neighbor.

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