A while ago a young woman in her early twenties arrived at reception and started speaking to my staff. I could immediately tell that this wasn’t an ordinary enquiry and stepped out of my office to meet this lady with such distress in her voice. I was not sure what had brought her to us, but anyone could immediately see that whatever trauma she had just endured had left her emotions raw and her body exhausted. Olida brought a steaming cappuccino and a slice of cake and settled her into my office so that we could just provide half an hour of solace even if we could not help further. Beth told us that her older brother (he was 26) was in hospital after suffering seizure upon seizure which resulted in further brain damage (he had cerebral palsy from birth). Their doctor had recommended that he come to us for end-of-life care. Between her sobs we could not get the full story, but after speaking to the physician it was explained that she recommended end-of-life care and that her main concern was now the effect of the ICU environment on his frail psyche and that he needed to get out of hospital immediately.
Thus started a landslide of phone calls, arrangements, getting the right teams on board and settling a lot of emotions from young family members, parents and stepparents who simply did not have the skills or wisdom to navigate a space like this. No one is ever is really prepared for these situations, but when the patient is this young, and when a family is so fractured with broken relationships it is especially difficult. Add to that that no one has slept or eaten properly in two days and you are going to see sparks. (If you read this blog regularly, you will notice how often we feed people. We have learned that hangry does not help anyone. I might start insisting on people napping before family meetings soon too!)
Finally, the patient, Harper, arrived in an ambulance. He was the most beautiful young man I’ve ever seen. He looked like a male version of Disney’s Snow White and just like Snow White after her fateful encounter with the poisoned apple, Harper was also fast asleep. We tucked him in and listened to his mom tell the palliative doctor about his journey with debilitating spastic cerebral palsy. He could not walk or eat or speak, was hugely frustrated, and battled with anger and screaming. This was hard to believe listening to his peaceful breathing. I got a feeling the family was beating around the bush. They kept talking about end-of-life care, but at first glance, he looked wonderfully healthy. We know what people look like, young, and old, when they are busy dying. Harper looked nothing like that. Dr Howes explained that although these seizures had affected him, his heart, lungs and other organs were strong, and there was no reason for him to not live another 50 years. I watched Beth’s reaction to this news and it suddenly hit me. They thought we would assist them with euthanizing Harper. Somehow, they misunderstood the recommendation to seek our care and services. This explained the carefully-worded and frequently repeated questions about morphine dosages, Pentobarbitral and legal contracts.. The family could no longer endure Harper’s care. I gathered Harper’s parents’ marriage had failed and his siblings, although they clearly loved him, were so exhausted that they wanted it all to end. They explained about his frustration, his screaming, his violent thrashings, the way his existence consumed their lives, dominated their childhood and morphed them into that “weird” family. How could we judge them? They were crippled by the guilt that they wanted him to die, and at the same time, they were desperate to have a life free from this cruel disability which consumed them entirely. They thought they finally had an out.
It broke my heart to tell them that although I can understand how hard this must be for them, we simply could not help. We could look after him and let them all rest, but to put it bluntly, that is where our role stopped. This was not going to become an argument about ethics or religion. Euthanasia is not legal in South Africa and whatever we feel about it, this is not what we do or facilitate. We knew that the family were coming from a place of deep hurt, desperation, and incredible sacrificial love. We offered a few days of reprieve but eventually sent him home. We think of them often, wondering how they are coping and how Harper is doing.
Dr Sean Davies makes a great case for the-right-to-die and I do not think him being under house arrest serves any purpose apart from our justice-less justice system being punitive and pathetic. However, if someone asks me, based on my experience working with the dying if I would ever recommend euthanasia, I still say I won’t. (The key here is that it is based on my experience, and this can still change). I went for lunch with my dear friend Annabel yesterday. Her father recently died a cruel death in his home. He deserved better. His children deserved better. I asked Annabel if she believes in euthanasia, and without blinking she said “ABSOLUTELY!” I was shocked at her quick response but understand why she unequivocally believes it is justified. She shared with me that his death was not gentle. There was no grace. If she could have saved him (and his loved ones) those last weeks of intense suffering and anguish, she certaintly would have opted for it, and she knows he would have too. I am surprised at the lack of understanding in the medical world around death. According to my extensive research (you know I’m sarcastic right?) not one doctor has prevented any of their patients’ eventual death, so why do so little of them and other professionals care to know how to make that final exit beautiful? (the cynic in me believes that it is because the patient can no longer sue after a mismanaged death). Annabel’s dad was larger than life (almost literally, he was taller than tall and walked with the most glorious posture). He was highly intelligent, charming and had a weird obsession with trains. Even in his 80’s he was so healthy and vigorous that he did not even wear glasses. I thought he would outlive us all! His diagnosis with stage 4 pancreatic cancer came as a shock, but from a practical side we knew he had the support of his most wonderful children, he’d had a good innings, they had the financial means to care for him and his wife was a nurse who worked with one of Johannesburg’s top critical care specialists. I had no doubt this would be a beautiful, gentle journey. Why not? I see it weekly, and of all the many patients who’ve died of cancer here, every journey was simply transcendingly, achingly merciful.
How wrong we all were when it came to Anabel’s dad. Instead of making use of the incredible palliative teams graciously provided to you by the medical aids through their advanced illness benefits, his wife opted to seek advice from professionals who understand preventative and invasive medical treatments. Palliative care is different. It is simple and wonderful and soft. I think it is the only medical science where the emotional and spiritual needs far outweigh the physical considerations. Annabel’s dad was not allowed the tender nurses who pop in daily to chat and explain processes, who quietly watch out for signs and prevent an array of symptoms without patients and loved ones even knowing it is happening. I am always astounded at how these teams get the meds just right so that patients are orientated, in control but yet, pain free. Instead of Annabel and her siblings sitting on their dad’s bed and giggling, reminiscing about old times and teasing him about the strange holidays he took them on, they had to listen to him battling to breathe (something so unnecessary and easy to prevent ). Annabel told me about the GP that bothered to come and see him all of once, and never advised the family to contact a palliative team. I am not sure whether this is due to the GP’s ego or ignorance, but I find neither excuse good enough. Said GP merrily prescribed morphine patches but never monitored the dosage and prescribed not a single measure to prevent pressure sores, anxiety and breathlessness. This is criminal! I am ugly-crying as I type this because I want to turn back the clock. Anabel and her family suffered such a loss and to add this level of trauma to their mourning is unfair and cruel. If something as extreme as euthanasia was the only way we could prevent brutal deaths, I would have agreed with Annabel, but it is not our only option.
A few Saturdays ago, I got a call from a fabulous critical care physician. It is funny that we get on so well. She is conservative, very Muslim and a divine academic and I’m, well, not. We have huge respect for each other and see the necessity in both our roles when it comes to the finer nuances of caring for people. She wanted to discharge a patient for end-of-life care and started to make arrangements to hand over to a palliative team. I arranged to go and see the patient, let’s call him Riaan, and agreed to meet his wife and Dr Ed Schutze, the palliative doctor in the hospital coffee shop to talk things through. I was once again amazed at how these doctors are different. Ed sat with Riaan’s wife, talking to her as if she were the only thing that mattered to him at that moment. By the end of our three hour coffee-date, he had an exact understanding of their marriage, their wishes, their children, grandchildren, medical history, beliefs and fears. He often held her hand, laughed whole heartedly at her attempts at humour, and I watched him lay the foundation of a relationship which would play a vital role from now on in every memory of her husband’s last days on earth. As our conversation progressed, I could see her relax before my eyes. So many of the little stresses and concerns were evaporating. Ed’s presence has such gravitas and one of the first things he does is gets everyone on the same page, sets up excellent communication and then earns your trust as his team looks after the patient’s dignity and comfort, but also makes the journey so incredibly smooth that the family can just focus on enjoying the last months or weeks with the person they are bidding farewell. This trust, camaraderie and connection carries everyone through to the last breath. On this particular Saturday, Ed never left Riaan’s wife’s side. He was with her every step of the way, through the ambulance journey, settling Riaan in with us, organising the meds, and for the next few hours. Riaan died two weeks later, but before that, we took his bed outside and he had a meal with his children and grandchildren in the garden. He listened to his favourite music, turned to the top volume as he was a bit of a rocker despite being 80! His children promised to look after his wife while his little Scottish terrier was curled up at the bottom of the bed. He watched his grandchildren swim their first swim of the season in our icy pool.
No one shortened Riaan’s life. No one prolonged it either, and there were no regrets. No one had to interfere with assisted suicide and then carry that guilt for the rest of their lives, but neither did they have to endure watching their loved one suffer.
My hope is that I never have to hear a story like I did from Annabel again. Euthanasia is such a polarising and either-or kind of debate, but there is middle ground… not helping people end their lives, but really helping them at the end of their lives. Perhaps that’s when exceptional care matters most.