My Father’s Death: Palliative care journey
Let’s begin with the word. My father (Jim) had been sent for tests because he was losing weight and had some sort of gastro-intestinal issue they wanted to run some tests on. We figured he might need anti-biotics, but they wanted to test to be sure. I was supposed to pick up his stuff from Fraser Canyon Hospital in Hope and take it to him in Chilliwack where he went for testing. When I called Fraser Canyon to confirm I was on my way, I got told he was already back, and did I want to talk to him. They were in an absolute rush to bring the phone to my father. That was weird. You can’t call patients on the ward, its like getting a Syrian Mullah on the Trump Ticket as Vice President to even try to get a message through the nursing staff, but they were absolutely leaping to hand the phone over to my father. What the Hel? My father’s voice, cold, hard, and grim gave me the reason. Pancreatic cancer. Inoperable, wrapped around the pancreas already.
The next weeks are doctors visits, and boy did he go through a few. Playing Hot Potato with the corpse in waiting is a sport, as no one is responsible for his care, as everyone is passing him off. How many meetings with how many doctors? I lost track honestly. The treatment options were: none. Radiation is a non starter, surgery is impossible, and chemo will kill him for sure. Palliative care is the only option.
My father and I have discussed this for years, we know the options, we know what he considers a win, and what he considers a loss, what he considers freedom, and what he considers prison. He will NOT die in hospital. He has willed it so, and I have oathed his will be done. Now the System gets involved.
They held the “Family Meeting” with the Social worker, doctor, and nurse. Note there is no mention of my father, nor myself as next of kin in the family meeting, as we were not invited, nor notified. When I demanded that we review his care plan, his code status, and the plan for his palliative care I got a call from the Palliative Care Social Worker, a trained professional whose only job and task is working with medical teams, patients, and families to work out end of life plans that address the patients and families needs in a cooperative and open fashion. Sounds great hey? Too bad the reality is that she was quite put out that I demanded she do another Family Meeting in which the family is actually present, and the patient is actually consulted. She was quite put out and tried to inform me how much work this would entail. I asked her if she was the Palliative Care Social Worker? She replied indeed she was. I then replied her only job on this fucking earth was to set up these meetings and fill out these care plans so she had the twin choices of do her fucking job or pass it to someone who would. We were off to a great start. My job is to advocate for my father, I will work with any and all professionals who are there to do their jobs, but I will not sit back and let people simply not do their job, and their duty to my father because it is the part of their job they find unpleasant. I am much more than unpleasant if you cross me, and I am willing to be infinitely more terrible than whatever distasteful part of your duty you seek to avoid, and I cannot be avoided.
The Family Meeting was insane. We had about a dozen people present. The doctor is the only one who didn’t come with their supervisor. Social Worker, Supervisor. Community Nurse practitioner, Supervisor. Physiotherapist, Supervisor. Hospital nurse, Supervisor. Hospice Care coordinator and supervisor (the last was the only one that really wanted to help, only she was the only one we didn’t actually need). I was there as next of kin, my Uncle Jack and Aunt Shirley had flown in from St Catherine’s Ontario, and my father’s long time friend and support Connie was there as well. It was pretty crowded. The meeting was pretty grueling.
We covered first what dad’s treatment options were, which was a long checklist of items done and items that could not be done, along with reasons for them. I will say this of his diagnostic and treatment, they worked swiftly, efficiently, and aggressively to move as soon as cancer was suspected to pursue any and all chances to treat. The fact was that at first presentation of symptoms, the cancer hand surrounded his pancreas, and he already had a massive blood clot lodged in his aorta. The cancer had spread aggressively through the surrounding tissue and there was no way to go after it that would not kill my father. Chemotherapy would kill him, he was brought in for testing at first weight loss because his early battles with stomach cancer cost him the bottom third of his stomach and top third of his intestines and he was already at the bottom end of the sustainable BMI index at his healthiest, with no prospect of getting better. That was pre-pancreatic cancer, this was the death blow, and all knew it.
Full marks to the team there, no irony, and deepest respect. From first suspicion to the full exploration of all treatment options, including consultation with three different surgeons, took only days, with the consultations with the radio-therapy teams, and oncologists about radiation therapy and chemotherapy happening in parallel. The full weight of the system at its best was brought to bear, and cancer won. That is wyrd, it weaves as it will, and to it even the gods must bow. No failure of the medical system in this battle, it was over before the first trumpet sounded, and they never had a chance. They gave their all with consummate professionalism, and a sense of urgency that is rare in civilians. This is the face of the Canadian Medical System when it works. What follows unfortunately is the face of the Canadian Medical System when it fails.
We went over his treatment orders, his code sheet. One by one we went over every possible way my father could die, and what was to be allowed for an intervention, and what wasn’t. Did you ever want to sit in a room and pass a death sentence on your loved ones a hundred times in a row? If so, that is the meeting for you. There was a real divide in the room. Two were able to use the words, and everyone else was not. My Uncle Jack and I were soldiers, and we loved dad as the two closest to him in life, for all of mine in my case, and for all of dad’s in the case of his older brother Jack. We were the only ones who could say the word death, and could sit there and state the reality that my father becoming confused and falling out of bed at night was not something to be feared, but welcomed as if he died from a fall, while It would be a terrible evening, would be far, far more merciful that what everyone agreed, and could provide huge detail on, was waiting for him should he survive the distance of pancreatic cancer which offered so many, varied, and horrible ways to die.
Beginning the meeting with about a ten minute mealy mouthed little attempt to prepare us for the fact that palliative care meeting meant that our loved one (they could no more say his name, than they could say death or dying) was going to (insert any word but die). That would be fine, if a little annoying. It was about like the wedding speech from a conservative Christian fundamentalist where they just can’t bring themselves to tell the couple its legal to have sex now. They couldn’t seem to bring themselves to say it, and promptly forgot about it for the rest of the meeting.
In every case as they talked about options, either Jack or I had to remind them that they have to stop basing all their judgements on the rationality of my father’s choices on their medical model. Each and every thing they disagreed with they did so on the basis of the fact that it did not prolong his life. At every stage, they defaulted to the medical model which is life at all cost. This is palliative care, life is off the table. No one is offering to save his life, we are looking at his death, and what level of enjoyment he may have of the time remaining, and what level of suffering he must pass through to finish dying. Every time we reminded them of that, they failed to meet our eyes, and began shifting in their seats like they had collectively soiled themselves and needed new underwear. The cowardice and hypocrisy in that room were staggering. This was planning of my father’s death, and none of the professionals in the room were actually willing to step outside their comfort zone of pretending to be saving lives to actually do their job of palliative care. This was to be a theme of the weeks ahead. Palliative care is not something the medical system does well, as they want only to save lives, and will strive always to pretend they are doing so, even when that is actively a problem.
The dear sweet hospice volunteer was a little weepy thing who cared deeply. I am not mocking her. I had no use for her, nor did my father, but her care was legitimate, and for those who wanted care and comfort, someone to hold their hand and pray with them at the end, I’m sure she would be lovely. My Uncle Jack is more than half deaf, so when the hospice volunteer mentioned that she had tried to offer her services to dad directly he “must have been confused at the time, because he refused her with some quite inappropriate remarks”. I was sniggering to myself when Jack looked confused and my Aunt Shirley translated for him “She tried selling Jimmy Jesus, and he told her to go fuck herself”. This caused everyone in the room to wince, but Jack and I to laugh. In all seriousness I had to tell her that while we thank her for her offer, and respect her commitment to those in need, my father’s spirituality was shaped by war in Africa. His beliefs can be summed up simply by the statement he offered me many times that “Every priest in the world should be lined up and shot, preferably through a nun”. To which my Uncle Jack (also a Congo veteran) agreed full force. Dad, Jack and I were actually the only professionals at death in this meeting, and the gap between those who actually understand death, and those who only serve life was vast and probably unbridgeable. Death simply is. Denial does not serve anyone, and acceptance of its reality is absolutely critical to making decisions when facing it.
My father thought hospital was the single most humiliating and degrading place to be, it stripped him of his independence, his liberty, his dignity, while making it impossible for him to rest. To him hospital was the equivalent to prison. He demanded of me to die at home, and I swore to my father it would be so.
Full marks to the DVA. The Department of Veteran Affairs made what I did possible. The care plan for getting my father home was in the hands of the Social Worker, and she proceeded to drop the ball in every single particular. You know, I once asked a Social Worker the difference between a Social Worker and prostitute, and she didn’t know it. Not surprising, they have about equal utility, only the former is overpaid for a service not provided, and the latter while also screwing you can at least claim to be providing a service you actually wanted. To get my father home required 1) a powered hospital bed 2) a hospital tray table 3) a Roho anticompression mattress 4) an overhead bar.
Lets review the Social Workers performance. Had me book a time off work to accept the delivery of the bed. Turns out, there was no bed available. Lost a day’s pay, had no bed for dad. I called the DVA, gave the company and contact that confirmed the palliative care program could not provide the bed, and voila, the DVA had one for me the next day. Point to soldier+DVA, zero points for the entire Ministry and the collective competence of Social Workers. The Social Worker called Connie to pick up the tray table and she went to Abbotsford to pick it up, taking a half day off work. Oddly enough, again the supply company did not have one to pick up. Connie contacted her own work and asked if her boss could loan her one, and on her own risk was able to secure one. This time family and friends score the point, the entire Ministry and all its Social Workers…..still zero. Roho anticompression mattress? Never ordered by the Social Worker. The supply company that was not asked for one by the Ministry contacted the DVA because they had expected a palliative care request to come with a request for the specialized mattress to prevent (really to minimize, you are NOT preventing) bed sores. DVA answered that of course it was authorized, and tracked down another company to provide the lifting bar. DVA now standing at three points, family one point, Social Workers and Ministry? Zero.
I arraigned for Dad to be transported home by Ambulance, and moved him into the bed myself. We had his No Code orders posted on the fridge, along with his Expected Death at Home form. EMS had been notified, as had all the community health care teams. I went back to work.
I got notified by Connie that Dad had been taken back to hospital, against all the orders, and given life saving intervention, against the No Code orders clearly posted both at the hospital and at his home. They had “saved” my father from a quick and almost painless death, against all of his orders, wishes, and the treatment plan agreed to by every level of medical professional in the community, in the hospital, and on file with the goddamned province.
I show up at the hospital, fire in my eyes, and willing to get my hands as bloody as they need to be to get to the bottom of this clusterfuck. This is what I got from the meeting I forced with the attending nurse, the admitting doctor, community health nurse, and of course, the useless Palliative Care Social Worker (because after all, this is all she does for a living, for a total of four cases in all of the Hope Region right now). Well yes, the orders are posted, and yes everyone involved is aware of them, but you see, if my father is confused at all, or not responsive, the care aids, nurses, ambulance personnel, and doctors are uncomfortable with following the written orders and will tend to fall back on their standard life saving protocols.
I asked if she meant they would only do what everyone in the room agrees is their legal duty if I am standing over them in the fucking room at the time, to which the Social Worker replied bluntly. “Pretty much, yes”
The doctor winced, and the nurse blushed. I turned to him next and asked him why he used life saving interventions on a man with standing No Code Orders. I reminded him that when he was admitted, those orders come up at the nurses station and would be on his chart, the same chart he wrote his orders on. I reminded him that not only himself, but the nurses at every shift signed that chart to signify they had read those orders all while proceeding to ignore them. The doctor replied that he hadn’t actually read the chart until told that 275# of raging next of kin with notarized Power of Attorney in one fist, and Expected Death At Home/Orders for Medical Interventions in the other was in the hospital demanding answers. Yes ladies and gentlemen, no matter what you do, no matter what you say, no matter what is agreed to in writing and written as a standing order, every single medical professional is free to ignore your wishes the second you are unable to verbally respond unless someone is standing in the room with a signed order that allows you to speak for them. Yes indeed, your palliative care team that has agreed to your plan for your death will save you from every single easy death that is offered, until you die in the most slow and horrible fashion possible simply so they don’t have to do something they are uncomfortable with. It is not about your death, it is about their comfort. Understand this, know this, prepare for this, and counter this.
I had to book time off from my work on an emergency basis to care for my father at home. I have no idea how much this has damaged my standing at work, and weather my career is now in jeopardy. That is fine, I am not happy about it, but here is the thing, unlike the System, I understand this is about my father’s death, not about my needs. My wife and two daughters are behind me out of the love that they bear my father, and the knowledge that he has always been there for us, and we will be there for him, regardless of cost. Right now our own bills are bouncing like frigging rubber balls, so the financial costs alone are staggering, the stress is worse, but the cost is agreed to, as duty to those you love comes first.
For days watching dad decline was hard. Each day he slept longer, was conscious fully less, and in his periods of confusion, things were pretty horrible. Death slow is ugly beyond all reason. It strips away your dignity, your humanity. The matter of doctor assisted suicide has again been sent to Parliament to deal with since the Supreme Court ruled the laws against it were unconstitutional. It is too late for my father, but for all of those who don’t have someone able and willing to stand the vigil I did, it is the only chance that people in my father’s position have of avoiding the worst fate I can even imagine.
Watching my father choke on his pills when the care aids came to deliver them was hard, but what was harder was the discovery that NONE of the medications given him were for his comfort at all. Not one. He was in agony, and they were choking him to give him pills that served no purpose at all for him. Antidepressants, antipsychotics, antinausea, vitamin pills the size of 22 Long Rifle rounds are being choked down someone who can barely swallow.
I put a stop to that. No more would they force feed him pills that were not for his care at all, that were to keep him docile when his wishes as expressed were clear, nothing to cloud his mind was to be permitted, period. Pain control only. That was his will; that was the care plan signed off on by his doctors, and totally ignored. Look up the name of every medication given, because the System will lie to you, but they do not actually have the right to argue with you when you catch them. My father’s orders while competent were clear, agreed to by the whole palliative care team, and then ignored when they were no longer facing us. I had signed power of attorney, so I am my father’s will, and remain competent and quite able to deal with such horse shit. Guard your loved ones, for the palliative care system cares only for the ease of the system, not the patient. Know this, prepare for this, counter this. You are the shield of your kinsmen, be ready and do not hesitate to deploy when you think your loved one is getting shafted. You are their only shield, be a strong one.
When my father was no longer able to swallow, I knew the end was near. He had already refused IV or nasogastric feeding. He would live as long as he lived as a man, and that was that. I was no longer able to take breaks, I would stand the watch 24 hrs a day until the end. The nurse practitioner would not be in for another 18 hours, so pain control when needed was administered by grinding up his morphine tablets, making into a slurry with ice-cream, and administering sublignal (under the tongue). This is a laborious process and the absorbtion was slow, so relief did not take the usual 20 minutes but close to forty before the effects were noticeable.
No longer able to speak, no longer oriented to time or place, my father still could recognize only one thing; people. For me or for Connie there was recognition, and as he past closets to awareness he would reach out with his remaining controllable hand and grip our hand with his full strength. For those moments, his awareness that we were with him (me always, Connie when she could and the bulk of his last two days), the cost was worth it a thousand times over.
He would never rise to consciousness again.
I learned to read his pain state by his breathing. Without pain control his breath was 36 labored and distressed. With pain control his breath was 24 labored. I read in his breath the state of his feelings, and followed the sound of his breath every moment that remained. 72hrs is the Canadian Infantry standard. You must be able to be fully operational for 72 hours straight to qualify, but this was not a very demanding watch so I could do far better than that, I was betting I could last at least 96, and I couldn’t see how Dad could.
Middle of the night, 0210 or so, dad began thrashing. Not a grand mal seizure, this was literally writhing in agony, a level of pain and horror that really exceeds anything in my memory, or imagination. If you know what I have seen and done so far in life, that would terrify you, and I assure you it terrifies me whenever the memory threatens to escape from the little box I have locked it in. I again ground up two tabs of morphine and administered it. Such a slow process, but all I could do until the Nurse Practioner arrived to put in a port for injections.
Full marks to the Nurse Practioner when she arrived. She called on Dad’s theoretical doctor, not the ones in the hospital, but the private practice GP who wrote his medication orders, and got some liquid morphine prescribed. I filled the prescription, and practiced with the provided syringe and port as the nurse gave the first dose herself.
I got the lecture then about how I must prepare myself that each dose I gave could end his life, and she spent about twenty minutes going on about how I could think of it any number of other ways, building chain after chain of alternate ways to look at things until I begin to wonder how anyone can function when they must lie to themselves that much about what they are doing. I don’t. I have discussed this with my father hundreds of times over the years in preparation. I will assure he has adequate pain control, he will not suffer needlessly. If his pain control measures result in his passing, so be it. The pain control isn’t killing him, the pancreatic cancer is killing him. All my actions will do, if they do anything at all is take him out of his pain. Take him out of his pain to comfort is a win, take him out of his pain to death, is a win. Leave him in his pain out of my fear is a loss. I do not lose, and my father will not suffer for the fear of anyone.
For syringes are prepared for me, to take him until the next visit. In fact, only two are required, and no, neither one caused his death to hasten. At 0545 the next day my father stopped breathing. I was expecting what the fiction has presented to us as the end, a gasping breath, a death rattle, or some other sign that this particular breath was it. There was nothing. His rate was 24 and labored, which was his best rate, and then he stopped. I snapped fully awake from my doze with the silence. I put my hand on his chest and felt for both pulse and breathing rate. No pulse was present in his wrists, no breathing was detectable in his chest. I went to the carotids, and couldn’t find them. There was no longer any blood pressure to allow the vessles to be palpated. He was warm to the touch, but the vessles were lost in the waxy flesh. He was gone. For one hour I must stand the vigil before I call the mortuary. That is the Expected Death at Home protocol. I begin the notifications. Connie, Jack, Jan, my own wife. Between calls I do my five minute ABC checks, the training of a lifetime defaulting to my own protocols, when you are passing off a casualty as beyond your scope of care you check airway, breathing and circulation every five min, and record vitals every 15. Well, that allowed my mind to know it was doing everything possible, which was literally nothing, while another part of my mind recorded a few thing, like his head was cooling swiftly, as was the torso that I had exposed. My other senses were telling me I could relax. The second I touched him, my emotions simply accepted he was not there. He was dead. That is why I began the notifications when the required one hour vigil had only begun. I will follow the protocol, but dad was no longer here, this was only his body.
Connie came to be with him before the morticians came. She wept openly, so I defaulted to being supportive. Honestly, given the choice between being caregiver and dealing with my own feelings, I took the cowards part and helped her with her grief. She looked upon my father as a second father for herself, and weeps for him the way his own daughter never would. She stands as family to me, for duty to him, is duty to me, and loyalty like that does not end with death. Strapping dad to the gurney and helping to carry him to the elevator and slide him into one of the four cargo slots in the unmarked white cargo van that picked him up to take him to the mortuary was helpful. This was not my father, this was just a body. This was a cargo pickup, not a patient transfer. Does that sound cold? It isn’t.
Cattle die, kinsmen die
You too will die
One thing alone will not die
The fame of a good man’s deeds
My father is dead, his deeds will be sung long after his passage, and the effect he has had in the lives of others will continue to be felt for generations to come. Death cannot touch what he means to me, to Connie, to Jack or Jan, to Christine or the girls, to my cousins across Canada, to his friends in Hope, to all those who worked with him as an Operating Engineer on projects from roads to hydroelectric dams, or those who served with him in the Canadian Armed Forces, especially those who went to war with him in RC57 Congo.
There is a lot left to do. Death begins a nightmare of paperwork, but it can wait. The important stuff is done, what is left is just stuff.
Life goes on. My father prepared me to face it, and his teachings, his strength, his voice will be with me always. Like my Grandfather before him, he is one of my sacred ancestors, one of the pillars of my world, even though their ashes are either in the mound already, or preparing for the flames even now.
Palliative care, it is a lot like labour. There is a painful and terrifying process that if you see it through will give you a new life, or in this case a new death. The passage between not yet living and life is hard when it comes slow, and the passage between dying and death can likewise be hard when it is slow. It is a part of life, and taking away its mystery makes it easier to face, easier to do, and easier to live with. After birth, you forget the pain of labour and focus on the new life that you hold. After death you can forget about the pain of dying and focus on the life that was. It was a good life, and it is worthy of memory. Birth and death are ugly things, filled with literal shit and blood, pain and details that in any other context would be deeply humiliating, but are honestly just the cost of the transition. Your hands wash clean, so do the sheets, and you can get back to celebrating the life that either has come into being, or has past. Either way, life goes on. Either way, love is always worth the cost, and always gives more in joy than pain. Embrace love, embrace life, and screw the cost.
So ends the death of my father. Now all that is left is the man he was, and what he taught all of us we could be.