Warning: this discusses failures in terminal care, and death
On Saturday, 29 June 2024, I observed the fifth anniversary of becoming a widow, noting that it was also my first anniversary as a widow knowing I was autistic. Having recently recognised my “need for cognition”as another autistic trait, in my growing library of traits, I turned to the internet to research autism and grief.
I found, among several research papers, this article, in Psychology Today. This paragraph stood out to me, almost shouted at me, and suddenly, the manner of my grief made sense.
In the autistic mind, grief doesn’t neatly follow a logical pattern. Instead, it’s a tangled bundle of trauma, isolation, depression, and sadness—a heavy knot that resists untangling. Grief for autistics isn’t a straightforward cause-and-effect scenario, as often seen in behavioral therapy. It’s a maelstrom of pent-up emotions, recurring emotional tsunamis, outbursts, and disorientation, all of which can manifest at the most unexpected times and significantly impact an autistic’s daily life on multiple fronts. (Srinivasan, 2024).
My response was to say, let’s add another aspect, that of a whirlwind, a tornado, that picks you up, spins you around until you don’t know which way is up, then dumps you, tear-sodden, croaky of voice, and no less bereft.
My late husband’s last days
My late husband’s last four days on this Earth saw two failures in care. I’ll give you warning, now, this is a graphic account.
Wednesday 26 June, 2019
Mid afternoon, nursing home staff looked in on Allan, my late husband, and thought he was asleep. They left him be.
Thursday, 27 June 2019
Nursing home staff attempted to wake my late husband around 8am, but he was non-responsive. The RN and Clinical Manager were called, and then they called me, telling me that he was unconscious, respirations were down, and fingers and toes were showing cyanosis. At this point, he was put on a two-hourly morphine cocktail.
Friday, 28 June, 2019
The night nurse finished her shift at 6am, just as the horror of her failures were becoming evident. That night nurse had failed to give him any of the two-hourly morphine cocktails during her shift, despite a clinical order from the Clinical Manager.
As a result, his bodily pain brought him out of his unconscious state. With complete dysphagia, a loss of control of the muscles in the throat, he was unable to speak, only moan. At the time, he weighed around 25kgs, on a 180cm frame. He had refused a feeding tube for nutrition and had also refused a drip for hydration. But, those moans; I can still hear them. Hearing your husband making those sounds and being unable to do anything, feeling utterly helpless, is a heart-breaking state to find yourself in.
The Clinical Manager and a small team swung into action, trying to soothe and settle him. That’s the cruelest thing. You can’t catch up on all those missed doses of morphine at once. It has to be slowly reintroduced in a controlled way. But oh, my, the things they don’t tell you.
At 25kgs, a body is literally skin and bone. There is very little muscle or body fat. Palliative care drugs are usually delivered subcutaneously, but when a body is skin and bone, where subcutaneously? The decision was to inject into pockets of body fat, in his abdomen and thighs. But consider this. Those drugs sitting in a small pocket of body fat don’t work. So the staff were trying to gently massage the injected drugs out of the body fat, rubbing directly on his bones in the process. His moans became wails, nonverbal crying from eyes too dry to produce tears. Gut-wrenching, again, excusing myself from the room because I just couldn’t take it. To see my husband, my life partner of 31 years, nearly at the end of the horrible journey that is Huntington’s Disease.
They tell you about Huntington’s Disease, but they don’t tell you about the death of a Huntington’s Disease patient. If not suicide, then catastrophic accident; if not in an accident, then aspiration pneumonia; if not aspiration pneumonia, then wasting away in the absense of a feeding tube and drip.
He was pain-free and unconscious again around midday. Supplier issues delayed the delivery of morphine pumps. These arrived around 3pm, and they were installed and drip feeding the morphine in regular, controlled doses.
By that time, I was utterly exhausted. The emotional and cognitive load of that day were extraordinary.
Saturday, 29 June, 2019
I awoke around 4am, the usual time for me. I checked my phone and saw, with a sinking heart, that I had missed a call from the nursing home. You see, after that horrendous day, I had gone back to my hotel room, had dinner and perhaps a bit too much whisky, and I had forgotten to take my phone off silent mode, which it had been all day in the nursing home.
When I rang back, the male nurse answered and told me that Allan had passed. He had had the two hourly “turning”, shifting a pillow from under one hip to under the other hip, at 1.30am. He continued to sit beside Allan’s bed, observing. He reported that at 1.44am, Allan had breathed out, and not breathed in again. That was it. Game over, life over.
I’ll post another day about the comedy of errors and the multitude of compassion I found, on that day. But for now, let’s look at the failures in care.
- Nursing home staff failed in their duty of care to Allan. This included something as basic as recognising significant changes in his health status, such as the difference between sleeping and being unconscious. Additionally, where was the attempt to administer “comfort feeding”” for dinner on Wednesday night?
- The RN on the night shift failing to administer morphine as prescribed contributed to no doubt significant harm. The pain and suffering that could have been prevented no doubt took minutes, if not hours off his life.
- Both I, as his spouse, and he himself had the right to competent care and timely medical intervention.
What could or should have been done?
These days, Queensland Health has clinician resources for Residential Aged Care End of Life Care Pathway. This was available in 2013.
End of Life Directions for Aged Care has a website and a Residential Aged Care Toolkit.
Palliative Care Australia has published Principles for Palliative and End-of-Life Care in Residential Aged Care.
What difference does it make to me know?
Knowing that I am autistic, with a new understanding about autism and grief, made Saturday, 29 June, 2024, a little easier. Yet, I will still stand by what I said last year, on Facebook.
Everyone’s journey through grief is different; become, once again, a student of your own life, then, once again, author of your own life as you regain the strength and compassion to go from reaction to response in your new state of being. But remember that grief is social. Don’t grieve alone and don’t ever let anyone grieve alone. Give them space and let them talk, and above all, hug. Human touch is vital.
Look after your bereaved friends. They need you.
This post is related to:
Failures in palliative care
Planning for the end – advance health directives, health attorneys and enduring power of attorney
The practice run
Essay: Love and Grief
The Auld Skald's Fudgel 