Why are doctors able to violate a terminally ill patient’s right to die?
My sister died a year ago, 34 days after major surgery following a rupture and gangrene of the small intestine.
She had a condition known as a Meckel’s diverticulum — an intestinal hangover from the embryonic period caused when the pedicle between the nucleus and the developing intestine is not reabsorbed as it should have been. About 2% of the human population have Meckel’s diverticulums, many more males than females.
The diverticulum, which develops as a small pouch in the intestine, is typically made of intestinal embryonic tissue and behaves just like the rest of the intestine. In far fewer cases, it comprises acidic pancreatic embryonic tissue that does not behave like the rest of the intestine. My sister’s diverticulum was pancreatic. She had gastric issues throughout her life. She was treated for a range of guessed-at conditions, but the condition was not diagnosed.
She was 71 years old when she died.
Her surgeon said the rupture looked as though a hand grenade had exploded in her intestine and subsequent lab tests revealed a highly aggressive form of cancer at the rupture site.
She emerged from theatre on a ventilator and efforts to wean her from it failed.
Her mouth and lips became raw and infected from the chafing of the ventilator tube, so after three weeks, they took her back to theatre for a tracheotomy.
For a few days, her breathing improved and they weaned her on to a continuous airway pressure ventilator through the tracheotomy tube. But within a day she was back on full ventilation through the tube and it became evident she would not breathe again unassisted. About a week after surgery she was diagnosed with a klebsiella superbug, which is common in hospitals.
Days later she was diagnosed with disseminated intravascular coagulation and with acute respiratory distress syndrome — both life-threatening conditions, even for healthy people.
But my sister was not a healthy person. In the last decades of her life, she suffered what seemed to be an unfair number of major health problems. Overriding them all was lupus, which she developed following a debilitating, stressful period. Lupus is a stress-induced, incurable, progressive autoimmune condition in which the body attacks itself. It results in ever-increasing, unrelenting and severe pain.
Following a major health setback in 2017, my sister — a deeply religious person — told me she prayed every night that she would die.
She told this to our other siblings and eventually — as hard as it was — her daughter.
For her, despite beautiful relationships with her deeply loved daughter, son and grandchildren, life had become unendurable. Her general practitioner was also aware of this.
My sister and her daughter were told that if she did not have surgery to repair the rupture, she would die within a day and her chances of surviving the surgery were only 15%. She agreed to the surgery.
In the week after the surgery, she was extremely weak and her son, who was not living in SA, was called to her bedside.
She told her children and me that she was tired, that she had had enough and wanted to die.
A do-not-resuscitate (DNR) order was signed by her daughter, who had her mother’s authority to do so.
A day later my sister tried to die. Her breathing and heart rate plummeted late on a Saturday night. The medical staff intervened, administering adrenaline, which shocks the heart and lungs into action again. They described it as a "noninvasive resuscitation".
At my next visit, my sister — who found it difficult to keep her eyes open — locked eyes with me, gripped my hand and used her little strength to draw me closer. "I am tired, I am so tired," she mouthed.
"I know you are," I said lamely, helplessly.
She frowned, closed her eyes and shook her head.
Then summoning what strength she could, she again locked eyes with me and gripped my hand. "I have had enough," she mouthed.
"I understand," I said, every fibre of my being feeling like a liar and a hypocrite. Her eyes bore into mine, and I will take that look of utter despair to my grave. She closed her eyes and shook her head, a deep frown creasing her forehead.
She tried again to die, at least another three times.
She was administered adrenaline every time.
My niece — an awesome woman who was closer to her mother than I have ever seen in a mother-daughter relationship — was caught in a terrible dilemma of wanting to do the best for her mother; of devastation at her mother’s condition; of having to say goodbye when it was the last thing she wanted; and of having the responsibility for making life-and-death decisions. The doctors told my niece they could not stop treatment while my sister had her faculties and they could communicate with her. Besides, they told her, "you have a long time to say goodbye". She relied on the integrity of her mother’s healthcare professionals.
But what did these health professionals think my sister was saying when she mouthed that she wanted to die? If they thought they were able to properly communicate with her, did they try to explain about the superbug, about her other conditions, about how she could not breathe on her own and was unlikely ever to do so again?
She was not told about the cancer, but that was not necessary given everything else bombarding her frail body.
My niece and I were confused about the statements that adrenaline was a "noninvasive resuscitation" when a DNR was in place. I felt it was a cruel and cynical violation of the DNR order.
I subsequently learnt, and told my niece, that in the medical fraternity adrenaline is considered a supportive treatment and not an intervention or resuscitation. I hope this helped ease my niece’s mind on this issue — that she was following standard, ethical medical guidance.
But, based on personal experience, I believe that administering adrenaline is resuscitation.
I have twice suffered allergy-linked anaphylactic shock. I collapsed, my breathing plummeted, my saturation levels could not be measured, my pulse was undetectable and I developed stridor — a loud wheezing sound — caused by swelling of the upper airway and which often precedes death.
I felt my organs collapsing, one by one. Adrenaline brought me back to life. The first time it was administered in the emergency room and the second time I administered it myself using an Epipen that I always carry.
At the time I had no other life-threatening conditions. I was not ill. I know from what was happening inside my body that it was not a supportive treatment; it was an intervention without which I would have died. It was resuscitation. It restored my breathing, it increased my heart rate and raised my blood pressure, it reduced the swelling in my upper respiratory tract, and I could feel my organs slowly kicking back into function.
I was acutely aware of all of these things as they happened.
I knew both times I was dying — which is not scary at all, it is rather peaceful. But dying was not on my wish list at the time, so I was most grateful for the resuscitation.
My sister, on the other hand, was critically ill and unstable. She would not have survived without even one of the several interventions including ventilation, intravenous feeding, litres of blood and several units of platelets to counter her persistent bleeding, a drip and bucket-loads of antibiotics and other drugs to maintain her heart rate and blood pressure.
Every day was a critical balancing act to keep her alive. If the medical staff had removed even one of these interventions, death would have ensued.
She said that she was tired of living under these circumstances and that she had had enough. She said she wanted to die. And she tried to die, not once but at least four times.
But the medical fraternity wouldn’t let her. They prevented her from dying as she wished and was trying to do, by administering adrenaline.
They resuscitated her in defiance of the DNR.
The medical fraternity may hold the view adrenaline is supportive, but ask any patient who has been given it and they will tell you it is resuscitation.
Administering adrenaline to resuscitate someone that ill and with such a fatal prognosis as my sister, and who is trying to die in a natural way, is unethical, immoral, just plain cruel and violates a DNR.
We need to start a conversation with the medical fraternity and the government to end needless end-of-life suffering, and the prolonging of life in the face of insurmountable odds and against the will of the dying.