I met Mr. Stevens* in March of this year. His left leg had just been amputated below the knee two weeks before his admission to Netcare Rehabilitation Hospital.
He was 63-years-old man with a long list of medical co-morbidities – including diabetes mellitus II, hypertension, hypoparathyroidism, renal failure, ischaemic heart disease and most recently peripheral vascular disease.
Mr. Stevens had been on renal dialysis for the last decade and was still on the waiting list for a kidney transplant. He was sharp, funny and knew the names, doses and frequency of all his medications – and he was particular about how he wanted to take it.
At the time he still had a negative pressure wound therapy (“vac”) dressing on his left leg, and his main goal was to recover and get a prosthetic leg so that he could walk again.
The national lockdown in South-Africa started on 26 March. By then, Mr. Stevens had been in the hospital for approximately four weeks, and all visitation of patients at hospitals around the country was suspended. It was around this time that he became ill, and his haemoglobin (Hb) dropped dramatically.
I transferred him back to the acute hospital for further medical care with the hope that he would be able to return soon. Sure enough, two weeks later, Mr. Stevens was transferred back. His surgeon treated him for wound infection and transfused two units of blood.
Once he was back at the rehab, Mr. Stevens was even more motivated to get well and back on his feet. Although he did not always have energy, he gave his best in his physiotherapy and occupational therapy sessions.
Unfortunately, this was not meant to be, and over the next three weeks, he again became tired and weak, and his Hb dropped dangerously low. I decided to transfer him back to his acute hospital for further medical care.
This time, however, he did not return so soon. He spent the next three months in the ICU fighting for his life due to septicaemia and a collapsed lung. His surgeon had no choice but to extend the amputation further to above his knee.
In August, Mr. Stevens was finally back at rehab. I remember being excited about having him as my patient again as we got along very well. When I saw him for the first time, I was shocked by his appearance. He had turned grey in the three months since I had last seen him. He looked tired and had lost a lot of weight.
His sense of humour was still intact, though. I so wanted to believe that he was given a second chance at life and that this time he would be on his way to recovery. By now he had spent six months in hospital and had not seen his wife and daughter since the start of lockdown.
As fate would have it, he was not even back at rehab for a week when I received a phone call to say that Mr. Stevens looked deathly pale and that he was bleeding from his dialysis port. My on call colleague had no choice but to transfer him to the acute facility again.
Six weeks passed before Mr. Stevens returned to the rehabilitation hospital. This time I knew, this was his last chance.
It was early October, and the lockdown restrictions had been relaxed. I remember the look on his face when he saw his wife and daughter for the first time in months. His wife ran towards him where he was seated in his wheelchair, and she hugged him tightly for about five minutes. I realised at that moment that what he needed more than a new leg was to be with his family.
Mr. Stevens was frail. There was no fight left in him. I decided to have the difficult conversation with him about a “do not actively resuscitate” (DNAR) order. He did not hesitate when I brought up the topic. He decisively said he did not want to go back to the acute hospital, nor that he wanted cardiopulmonary resuscitation (CPR) or to be placed on life support. Mr. Stevens said he knew he was nearing the end of his life and that he was ready to die.
Mr. Stevens was mostly sad about leaving his wife behind and wondering if she would cope. We decided together that we would hold a meeting with his wife, daughter, and his social worker to discuss the DNAR order.
I had a lump in my throat the day we had that meeting. His wife cried softly, and I could see that he was trying to be strong for her. We agreed that the best plan was for Mr. Stevens to go home as soon as possible – even if that meant going without a prosthetic leg.
Sure enough, even before he was discharged, Mr. Steven’s Hb fell to eight. He was breathless and required supportive oxygen but did not want a blood transfusion. At that point, I referred him to palliative care.
When the word palliative care is mentioned, most people automatically assume it’s only for cancer patients who are busy dying. Some even think it means hastening death or giving up on a patient – this couldn’t be further from the truth.
“Palliative care is specialised medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family.” (The palliative care society)
The next day Mr. Stevens saw the palliative care doctor who discussed end-of-life decisions with him. He also asked the patient about his hopes and dreams, his fears and his expectations. The doctor recommended that Mr. Stevens decrease the number of dialysis sessions per week, and he cut the majority of the “unnecessary” medicines. He also recommended treatment to alleviate symptoms such as breathlessness and anxiety.
Mr. Stevens finally went home to his family on 23 October. A nurse from the palliative care team met with him at home that day, and the doctor checked on him a couple of days later.
Four weeks later, I received the message from his palliative care doctor: Mr. Stevens had passed away. Although I was sad to hear this, I also felt a sense of peace. We could not cure Mr. Stevens of his illness. We could not help him walk again. We did, however, manage to give him four more weeks with his family.