Tag Archives: How to Die

Family communication: seeing eye-to-eye through our diversity

Nephews, brother, sister-in-law, niece and Dad – out on a walk

Writer’s note: If you find this blog post of interest, you might want to check out a discussion on the NY Times New Old Age blog in which readers comment about communications techniques they have found helpful – a response to the article, “How Do You Keep Track of It All?”

My brothers and I look so little alike – and are so little alike – that it’s a matter of family jest. The brother who is closest to me in birth order and I once had to show our driver’s licenses to prove we were related to a woman who knew us both yet was unaware that we were related. My eldest two brothers are 15 and 10 years older than I am. The family unit they grew up in – which included a younger sister who died of leukemia in the 1950s – was a different one than the one my younger brother and I knew. It would be easy for us to have different ideas about “what to do” about our parents as they aged.

Instead, we seem to be in lock step.

Going back 15 years, when my mother’s dementia grew worse, and later, as she struggled with late stage lung cancer, my brothers and I evolved a system for communicating with one another. That system reduces stress for my Dad and makes it easier to ensure that he is getting the care he wants – and avoiding the care he doesn’t want. It also provides me with emotional support, and now it seems to be helping my brothers and I to imagine how we will be a family after my father’s eventual death.

That “system” started when my brother who is nearest in age called to suggest that we rescue Dad for a few weeks (by taking Mom on vacation) during the period when my mother had become increasingly agitated. Dad’s angina was increasing as her anger and confusion grew. Later, when my mother was eventually hospitalized and near death, our sporadic phone calls were replaced with much closer coordination by phone and email. We took turns staying with her in the hospital and took notes during our “shift”, briefing the next family member who arrived to sit by her bedside. On at least one occasion, our notes enabled us to correct what would have been a grievous medical error since her chart became so large that it was split in two – and some important information about her medication was not transferred to the active chart. When my mother came home with hospice, we tried to keep one another informed of her status as we rotated for three-to-five day stays at my folks’ house to oversee her care and my father’s recovery from his third bypass surgery.

In the past six years that Dad has lived partly with me and partly in an assisted living apartment, I’ve sent periodic “Dad Reports” to my three brothers with details about his spirits and physical health. Instead of quietly nursing resentment when I felt they weren’t doing enough to reach out to Dad via mail or email, I point blank asked them to step up their outreach to him. Our efforts were greatly enhanced by a “Presto” machine that automatically prints out emails sent to my Dad’s email address, thanks to a gift from my eldest brother.

As I have become more concerned about my Dad’s failing health, I have shared recent blog posts with my brothers, including my long rant after reading Joe Klein’s cover feature for Time magazine, “How to Die.” And it was that most recent outreach that uncorked a cascade of emails from my brothers that truly surprised and moved me. Not only were they aligned around preserving my Dad’s comfort and dignity, but they vocalized a commitment to our family unit.

My first reply came from “brother #2”:

I guess I’ll start by saying that for the past year I have been expecting a phone call from my Betsy or the staff letting me know that Dad had passed – I know that phone call is inevitable, and I know that every time I go up to provide respite for Betsy, I might be the one making that call to the rest of you. Selfishly, I don’t want that duty but if I have to be the one to make the call, I will respect Dad’s wishes. I know that he has lost everything he loved or took pleasure from in life, and has become a dependent. He can’t hear us, and I know it galls him.

Is there value in a rush to the ER? Well, the medical profession can certainly prolong a life that has become burdensome and often painful, but they cannot turn back the clock and give life in abundance. And ultimately, all the tests in the world probably won’t offer much that will give him a more abundant life.

I am conflicted by these thoughts – I like the family we have become and the strength that we siblings have found through Mom’s hospice. In many ways, I think that Dad has been the glue that bonded us all together, and I am fearful of losing more than just Dad when he passes away. But that’s not a reason to withold from Dad the end he wants.”

Then brother #1 weighed in:

(Brother #2) has done a good job of capturing my thoughts and feelings on this subject. And like him, one of my worries is that Dad’s passing will dissolve the glue that has kept the four of us close as siblings. I have the longest experience of the four of us with the reality of Dad’s mortality, going back to when Mom and I drove Dad to the Navy infirmary at Pearl Harbor when he had his first heart attack. I recall well how worried Mom was that Dad wouldn’t come out of the hospital alive, but yet he did, and he has hung on tenaciously for nearly 45 more years. As much as it distresses me, his race is almost run, and he has fully earned the right to let go when he thinks the time has arrived. Like (brother #2), I wouldn’t want him to die in distress, but neither do I think it’s fair to him to prolong his life if he wishes otherwise. 

It obvious that the time is drawing closer to when we will lose Dad, and as prepared as I have been for years for him to die, I still dread the reality. We have all been so incredibly lucky to have had Mom and Dad as our parents, and with Mom gone it will be even more wrenching to lose Dad as well. So, I think we should continue to dialogue about our courses of action and be available for one another. As the oldest sibling, I feel a good deal of responsibility for the three of you, even given the fact that you are all strong adults and don’t need me to look out for you. But old feelings and habits are hard to break…”

And lastly, brother #3:
“I have been acutely aware of Dad’s heart condition these many years, and recall thinking when we were off hunting by ourselves that something could happen anytime.As Dad approaches 96, he has clearly run a great race; he recognizes his time is coming and is at peace with that. I have always believed his end would come with a final MI/cardiac arrest; but who knows. Should we find ourselves in a situation where hospice is appropriate – perhaps the heart failure finally becomes unmanageable – then hospice would  be a good choice, and without further intervention other than palliative. On the other hand, if a condition presents that can be reversed or managed to maintain quality of life then I agree the right thing would be to obtain the care.
I agree with (brother #1’s) observation that Mom and Dad helped us to form a strong family. It’s unimaginable to me that we would somehow fall apart after Dad is gone. I enjoy being with each of you and will always love all of you.”
Not only did I find my brother’s emails restorative, but it gave me hope that we will find a way to enjoy one another into the future, despite our differences. Without this effort to communicate with one another, I am certain that the future would have seen us drifting apart, separated not only by physical, but emotional distance.

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Is there value in prolonging life after 80? 90?

The title of this post is provocative, but so is this use of the politicized phrase “death panel” by Joe Klein in his June 11 Time feature article, “How to Die”: “My parents died serenely, with dignity. When you are a death panel — when the time and manner of their passing is at least partly in your hands — that is the very best you can hope for.”

Mr. Klein’s story — which encompassed his parents’ relationship, their struggles with very old age, his Dad’s tendency to act “as if old age were a reversible condition,” and finally his experience with Geisinger’s candid communications style and evidence-based approach to medical care — was truly moving. I recognized in his account the emotional tug-of-war that goes with being the caregiver who has the day-to-day responsibility of interpreting a parent’s end-of-life wishes.

The Time feature (click to see a video with the author here) and another article in the New York Times’ “New Old Age” blog has pushed to the front of my mind this question: will I send my Dad to the E.R. again?

Klein describes how his 91-year-old mother’s trips to the emergency room were becoming more frequent. When he was traveling out of state, he got a call that she was in the hospital, had pneumonia and wasn’t eating. He was told that she would die unless they put in a feeding tube. Although he knew she specifically didn’t want a feeding tube, he authorized it so that she might have the chance to recover. He later came to believe that he made a mistake in that decision and that “there are better ways to handle the end-game.”

The New York Times blog article, “At the End, a Rush to the E.R.,” by Paula Span, comments on a study just published in Health Affairs and calls the E.R. “a conveyer belt to hospitalization.” The analysis of the medical records of 4,158 people over 65 who died over a 14 year period revealed that 75% had visited an emergency room in their final six months and 68% of those died in the hospital.

To go to the hospital or not is almost certainly a decision I will face in the near future

In January, my 95-year-old Dad had a seizure-like episode while we were out walking.  I didn’t panic, but my heart was racing and I had to decide what to do almost instantly. (I blogged about my internal crisis last month.) Fearing that he was having a stroke, I immediately called 9-1-1 and first responders arrived minutes later. Dad quickly stabilized, so much so that the paramedic asked me if I wanted him to go to the hospital in the ambulance — or not. I know that t-PA, the drug used to break up clots associated with strokes (thus preventing many of a stroke’s worst effects), has to be administered within three hours of the event, so I opted for the ambulance run to the hospital.

After a long day of waiting on an uncomfortable ER “bed”, they weren’t able to figure out what caused Dad’s symptoms. He was admitted for observation and spent two nights. They did a bunch of tests (blood, X-ray, CT, MRI, ultrasound, echocardiogram, and even a nuclear medicine stress test) and concluded that he did not have a stroke, and that his heart is actually in very good shape except for the old damage from his original heart attack.

Although he had no procedures, the tests and just being in the hospital were very uncomfortable for him. Holding still during an MRI was excruciating. He was exhausted after his discharge.

But now we have information we didn’t before. He doesn’t have major blockages in his heart or his carotid arteries. His congestive heart failure — a condition he’s had for at least 10 years — will continue to be treated with medication.

So under what circumstances would I send my Dad to the hospital in an ambulance again?

My big concern is that Dad not be in acute pain or discomfort. If he falls and hurts himself, I won’t be strong enough to help him, and he could be in a lot of pain. So I would authorize the ambulance run, but I’d lobby like hell to get him out as soon as possible. If he has significant chest pain, I will also call 9-1-1. I stopped by an estate sale earlier today and talked with the son-in-law of a neighbor who passed away in December; his Dad went to the hospital after not being able to defecate for several weeks. I’d send Dad to the hospital under the same circumstances. If he was very ill and I thought he could recover with IV antibiotics — Dad’s still got the biceps of a 40 year old — I’d probably authorize a short hospital stay. But I will say “no” to anything but the most benign diagnostic tests; we’re done with long diagnostic procedures. And I’d say no to ventilation, feeding tubes and the like. But any time I say “yes” to the hospital, I know I’m taking a risk that he could decline and die there. He doesn’t want that, and neither do I.

My dilemma – like many caregivers’ — is the unpredictability of the period ahead

Although I love “The New Old Age” blog, another recent post pissed me off. “Among the Very Ill, Confusion about Life’s End” describes how annoying geriatricians find it that older Americans are unwilling to plan for the end of life. Seems that a study of people who met hospice criteria (expected to die within six months, although many live longer) most often answered “I don’t know” to a question about what they expected the course of their final illness to be (answer choices: suddenly, within a day or two of a health crisis, after a prolonged illness or “I don’t know”).

The article noted, “Each individual had a terminal disease with a somewhat predictable trajectory, though precise prognoses are always difficult.”

That’s what pissed me off… because with a few exceptions (mostly cancer), death isn’t very predictable. I’ve seen the data at hospice conferences. And in my experience doctors really don’t like to be asked to estimate how long someone might have.

Dad ought to have been eligible for hospice care, oh, about seven years ago. The cardiovascular surgeon who performed Dad’s third open heart bypass surgery in 1999 expected Dad would have five good years before his heart finally gave out. I’d have Dad in a hospice program in a skinny minute if someone could tell me that he is likely to only have six months to live. My mother was given an estimate of 4-6 weeks after being diagnosed with terminal lung cancer in January of 1999. I fought with the hospitalist to bring her home to die, despite his telling me, “It’d be kinder for all parties concerned if she just winked out here in the hospital.” She died on May 10, at sunset, with my Dad holding her hand, thanks to great hospice care that kept her mostly comfortable to the very end.

Putting a value on the end of life

Mr. Klein noted that his mother had a heart valve operation when she was 80 for a heart murmur that was getting worse. He went on to explain how much it cost.

My father would have died without that last open heart surgery in 1999, when he was 82. I’m sure it cost a lot, too. But in the 13 years since then, some very important things have happened.

He has spent many hours with me reviewing his life and some of the things that have caused him the greatest pain – especially his father’s lack of interest and involvement, and the death of my sister due to leukemia at age four. He’s also had a chance to tell lots of stories about things he’s proud of, moments he relishes. I know him in a way that wouldn’t have been possible while my Mother was still alive. He has given so much love and acceptance to my three brothers and me in these intervening years.

Though I am all for improving care coordination and undoing the perverse incentives of Medicare fee-for-service, I hope we never discount the value of having the time and health to come to terms with the approach of death.

My Dad feels ready to go, and I am ready to say goodbye when the time is right. And in the meantime I will do everything in my power to keep him happy and comfortable, which (unfortunately) may mean at least one more run to the hospital before he can be enrolled in a hospice program.


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