My father died last week after a long period of declining health. That’s what I wrote as the opener to my father’s obituary. And, it’s true. He died in a nursing home after a 10-year long health struggle after a cerebral aneurysm. Two years prior to that he suffered tachycardia and was fitted with a pacemaker. One of the tachycardia attacks would have killed him during a camping trip if not for the resuscitation efforts of a great rural rescue team. Today, I wish they hadn’t revived him. Then, he would have died outdoors, in the mountains he loved, peacefully, unconscious and unaware of approaching death.
His actual death wasn’t nearly so peaceful. He died in a semi-delirious morphine-induced waking dream state after he spent one week under hospice care.
Even as a kid, I dreaded the thought my father would ever have to be institutionalized when he was elderly, like my grandmother. My father was an intense, driven workaholic. He worried about every misspent minute and was never able to fully relax. He enjoyed his life though - approaching it in a hardworking manner. Even on our camping vacations, he woke up asking, “So, what’s the agenda for the day?”
So, when our worst-case scenario for my father played out – aneurysm equaling significant loss of memory, cognition and motor skills, and eventual institutionalization we all feared a terrible future for him. We imagined constant agitation and panic –my father ramming his wheelchair against walls in frustration.
But, oddly, things didn’t work out that way. The aneurysm and consequent surgery acted as a partial lobotomy. Gone was the drive, the agitation, the dissatisfaction with daily life. For the first time in his life, my father started to live in the moment. His temporary memory was on permanent reset. He repeated small tasks and thoughts endlessly. How forgot the big things. He got lost in his old neighborhood. He forgot how to walk.
Amazingly, throughout his slow decline over 10 subsequent years, my father managed to enjoy his days. He lived in nursing homes in three states as my siblings alternated duties as primary caregiver and healthcare proxy. His last three years were spent with me.
The first two years were pleasant for both of us. His nursing home was a large, homey Tudor mansion with a distinctly un-institutional feel, yet large enough for strong hospital affiliations. It was well recommended and maintains a four-star rating.
On warm days, I’d roll my father out in his wheel chair for fresh air and to watch the seasons change. He’d complain about the bumps in the old sidewalks hurting his back, but always with humor and a sparkle in his eye. His new brain caused him to relive moments over and over again. A former civil engineer, he’d gaze in wonder at the side of the nursing home and remark, “Wow, look at the brick work. They don’t make ‘em like that anymore.” Two minutes later he’d look at the same building and make the same comment. Over and over again, living a Groundhog Day – he’d learned to appreciate moments and small things – bricks, trees, sidewalks, food, television, coffee. These were all good things to be savored with relish, repeatedly.
Life started to decline fast for him in his last year. It started with a visit to a speech therapist. After a barium swallow test, she determined he was beginning to aspirate his food and drink. Afterwards he was given gelatin thickeners in all his liquids, and his food was pureed into a watery mush. Squash looked like carrots, which looked like butterscotch pudding, which looked like pureed chicken. Everything smelled the same. But, no matter, my father loved to eat and he ate the institutional gruel with gusto, often lingering over his food for hours until the next meal was served. Without independent locomotion, not even able to use the toilet on his own, food seemed to have become the biggest part of his day, and focus of his attention.
That’s why, after the first emergency visit to the hospital for aspiration pneumonia, I told the hospital doctor that I didn’t want a feeding tube implanted. He enjoyed eating. I wasn’t going to deny my father one of his last pleasures just to gain a few more years with him. The doctor agreed enthusiastically, “It’s great you feel that way. So many families want to keep their loved one alive no matter how crappy life has become for them. Feeding and breathing tubes are no way to live. Quality of life versus quantity is my motto.” I had no idea how sick of that maxim I was to become. That day, I went home from the meeting feeling pretty good about my decisions on my father’s behalf.
The second and third emergency trips to the hospital were due to aspiration pneumonia, failing urinary tract system and constant infections due to implantation of pre-pubic catheter, in addition to alarming tachycardia.
The hospital doctors and nursing home staff were starting to initiate frequent “serious” conversations with me since I was my father’s legal health care proxy. Oddly, these conversations were starting to remind me of talks I’d been having with veterinarians as I nursed my terminally ill dog. The phrases were very common: “quality versus quantity,” “comfort care,” “palliative care,” “You’ll know when the time is right…He’ll tell you with his eyes.”
These are phrases vets use to gear a dog owner up for inevitable euthanasia when all treatment options become futile and the animal is suffering. My father’s caregivers used these same phrases yet; in America we don’t have legal euthanasia options for human beings. I was very naïve.
After these “serious” conversations I started to think to myself, “Well, what do you want me to do? What exactly are these people asking me to do?” At the same time, I knew my father’s upkeep at the nursing home was getting very burdensome for the staff. They were getting him up and out of bed less often, pressuring him to eat faster, not including him in group activities and card games. I had to prod the staff to get him into his wheel chair and out with the other residents rather than lying in bed in front of his own television all day.
Still, in spite of discomfort and loss of mobility, my father’s attitude was good. He still enjoyed his mushy food and the companionship of old women sitting around watching Lawrence Welk reruns and doing jigsaw puzzles.
After my father’s fifth visit to the hospital for the now-familiar aspiration syndrome, a nurse approached me and asked if I thought it was time for hospice care for my Dad. I was a bit shocked. I knew he was slipping fast, but I hadn’t thought him “terminal” yet. I envisioned him living on for a couple more years, sitting in the sun in the warm months, ensconced in front of the communal wide-screen TV for the cold ones.
Eventually, my father’s breathing seemed more strained and, for the first time, he seemed distressed by his physical symptoms. Two more nurses approached me about starting hospice care. This time I agreed. My mother found comfort in hospice care for her painful end-stage cancer and I hoped for the same for my father. I thought hospice would mean increased nursing care and more freedom to drink non-thickened liquids, as he seemed to be increasingly dehydrated.
I met with a hospice nurse and social worker and alarm signals started to go off as I found the social worker artificial and patronizing. The intake nurse typed on her computer during our entire first meeting. I should have walked out. The hospice was recommended by the nursing home and is a large national corporation. Initially, I considered a small, community-run organization located across the street from the home, but figured it would be easier for staff to communicate with the recommended hospice. Mistake.
The hospice nurse said the standard “protocol” for someone in my father’s situation was Roxanol to reduce respiratory distress and Ativan to reduce anxiety. At the time, that made sense to me. I didn’t realize that Roxanol was morphine. During my father’s heart surgery he’d been given morphine and suffered agitation. And, here’s my caveat to anyone in control of the healthcare of a “terminal” person – go to the initial hospice meeting, write everything down, don’t sign anything, go home, research everything from to bottom. Then, sleep on it for a night or two before making such a momentous decision. I wish I’d done that.
Perhaps the months of hospital visits took a tool on my psyche. I felt I desperately needed to trust someone. I didn’t have the energy to do my usual blitzkrieg of Internet research. I just wanted to put my father’s care in competent, caring hands that would make him comfortable as his days wound down to the last.
That was the promise of hospice. This is what actually happened: my father was dead within a week of the initiation of the hospice “protocol.” He didn’t die the calm, sleepy death I wished for him. He died restless and hallucinating from morphine. He was flushed and feverish for days - chattering at walls. He seemed terribly dehydrated so I poured thick McDonalds milkshakes down him every visit. In the end, the funeral director commented on how dehydrated he looked. I believe my father was never given anything to drink, except my milkshakes, after hospice was instituted.
I researched Roxanol and discovered it was morphine. I called hospice and demanded an immediate stop to the morphine and the Ativan. Still, the drugs proved fatal. The attending nurse said it was a “coincidence.” She denied the drugs caused the agitation even though my father never suffered it until he took the Roxanol. The hospice, which at our initial meeting had promised thrice-weekly phone updates and responsiveness to my concerns, was testy and intractable.
No, we don’t have doctor-assisted euthanasia in America. What we do have are millions of defenseless elderly people under hospice care being killed by “protocol.” The dictionary definition of protocol is “a written plan specifying the procedures to be followed in giving a particular examination, conducting research, or providing care for a particular condition.” I’m now finding out that the trouble with some hospice care is that protocol is adapted to patients with a “one size fits all” approach.
My mother with terminal cancer was a good candidate for hospice protocol of palliative morphine and Ativan. My father with chronic COPD was not. They both received very similar care although my father did not have specific or distressing pain. I’ve since learned the combination of morphine and Ativan can be rapidly lethal for patients with compromised kidneys, congested lung function, and dehydration. I believe hospice hastened my father’s demise.
Worse, is the suspicion the end result was intentional on the part of the nursing home and hospice staff. Not that they held ill will towards my father or any malevolent intent to murder him – they just view him and all the home residents as an assemblage – old people in pain, no longer able to do what they could when they were young, memory disabled – loss of youthful facilities equals suffering. And in a society obsessed with youth and health, suffering must be palliated. To death.
Clear in all the comments and discussion with nursing home and hospital staff is that they felt my father’s life was no longer worth living - I was somehow keeping him alive too long for my own benefit. More veterinary euthanasia-speak, yet that rhetoric was used frequently in convincing me to sign my father up for hospice.
In addition, advance directives are usually written when a person is healthy. When he was 60, my father wrote a directive urging us to forgo intubation and artificial means to extend his life. Young, healthy people can’t possibly imagine how much another day or another moment means when old and ill – regardless of chronic pain or discomfort. As my father grew older and sicker, each moment within his grasp became more precious.
I also started to feel differently when reading books by cancer surgeon Bernie Segal as I was going through my own serious illness. He cited a common negative attitude towards so-called terminal cancer patients by medical staff that suffering people couldn’t enjoy life. Segal countered by saying that if someone is able to wake up in the morning and enjoy one thing that day – a cup of coffee, reading in the sun, whatever – then that patient’s life was worth living and worth fighting for. I never forgot that.
I know my father had a few more days to enjoy in the sun. After a long dark winter, I wanted to get him out in his wheel chair a few more times to see the blooming flowers and trees and to feel the sun on his head. My siblings wanted time to fly here from various places on the globe to see their Dad one more time - to say “goodbye.” Those may seem like small things to medical staff operating on protocol-mentality.
Those moments were stolen from us and are an incalculable loss. If I could reverse time - if I had hindsight - I’d never subject my practical, reality-loving, detail-oriented father to final days of morphine-induced confusion. It’s unbearable to me – a life of beauty and resolve ending in a mirage. Of course, I’m painfully stuck in the present and I’ll carry this guilt with me into the future. I can only warn strangers to fully research their own hospice decisions before signing a life away.
I’m sorry, Dad.
- Massachusetts, USA
- January 01
- Adjunct Professor
- Bridgewater State University
MY RECENT POSTS
- Dad, I Really Didn't Mean to
April 26, 2011 09:24PM
MY RECENT COMMENTS
- “Your mom was so
beautiful and you do credit to
life with your
May 07, 2011 10:38AM
- “That's incredibly sad,
and I suspected as much - that
hospice as a
April 30, 2011 10:34PM
- “Cathy, I'm so sorry to
hear what happened to your
April 28, 2011 07:58PM
- “Thanks for your
comments. I do feel better yet
so sad to hear
April 27, 2011 08:20PM
- “I think you were very
lucky to have found
April 27, 2011 11:17AM