In Sickness And In Health…..Until Death Do Us Part

As a young physician I would challenge the potential fatality of illness, and my medical chutzpah pooh poohed the concept of being on death’s door. Now that I’m older and hopefully wiser, I think I have overcome some of the discomfort that thoughts of dying and death generate. I understand that illness, dying and death are along a continuum.

My recent exposure to illness, dying and death, in my own patients, family or friends, makes me ponder my own mortality. From a non medical perspective, overcoming fear of death is part of life. I think our concept or definition of death is somewhat limited and restrictive. If you consider dying and death to be a journey then that realization can be quite emancipating and exhilarating. You are then more likely to embrace both life (and death?) more passionately.

One of the hardest things for any parent to deal with is the death of their child. As part of the kindergarten diaries, I wrote about the life and death of the baby with the bucket list. That was an attempt to process dying and death of a child from my 5-year-old daughter’s perspective, as well as my own.

'End of life' decision making is a huge part of my professional medical training in America. I have had much discussion with Ayesha, my wife, about how no heroic measures should be taken if I were to be in a serious motor vehicle collision, or something else, like a chronic illness or cancer, that leaves me devastated...on the ventilator. In other words an 'advanced directive' so that she doesn't have to make such a difficult decision, about keeping me on life support when things are so grim per the experts. Being in the medical profession I tend to see worse case scenarios aplenty. I also see doctors playing god and being extremely aggressive, at times because the family wants 'everything to be done', when logic demands conservatism and letting nature take its course.

To get a non-physician's insight I approached my teacher, Rakhshee Niazi, who recently lost her husband to Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) a devastating neurological condition.

This is what I asked of Rakhshee: “How did you reconcile with your decision to have Anver, your husband, fully resuscitated the time when he ended up on the ventilator and for the subsequent 15 years? Did you at any point consider ‘do not resuscitate’ (DNR) status, given the poor prognosis of his ALS? I've never had this discussion with someone who actually had to go through with such a decision making. I've assumed from my cut and dry medical perspective that logic would be to let the person go.”

The response that I got from her, verbatim below, shook me to my soul. It presented a very different perspective, primarily of the 'loved one' versus my practical medical one that I had become more and more attuned to over time.

‘Anver’s story' is such a stark reminder that there aren't many absolutes in life...

Anver’s Story – The life and times as retold by Rakhshee

I have gone down memory lane these past 2 days as never before since Anver died, laughing and crying by turns. There was so much laughter and so many tears in our life... but is not that what life is all about?

About a year before he was put on the ventilator, Anver began having problems breathing. For a long while we thought it was due to lung infections for he had already had gastrostomy, but would have a little food by mouth too. He would aspirate and develop lung infections quite frequently.

When he began to feel continuously short of breath his doctor told us our options - the ventilator or coma as his oxygen saturation fell. I remember those 2 days and 2 nights that we talked through what it would mean for him to go on the ‘vent’.

Although neither of us said it what was really being decided was whether he should live or die...

He was very clear about one thing. If going on the vent meant spending the rest of his life in hospital he did not want it. And the only vents available were those in ICUs of hospitals. But then one of those strange coincidences, that one can never fathom, happened. A friend happened to mention Anver to her sister who happened to live in New York, whose husband happened to be a pulmonologist and whose father happened to be coming back to Pakistan in 2 weeks. He would send us a portable vent... We had not even known about them.

The morning after the night I spoke to the pulmonologist in New York we had to rush Anver to hospital. By the time we reached the emergency room he had no pulse, no blood pressure and his oxygen saturation was 52. But he had 15 more years of life.

He made making decisions so easy for me. When the doctors had trouble figuring out the portable vent, he told them they were using the formula wrong for working out the settings. He also told them how to set it right! How could we not but decide to put him on the vent?

The list of all what he did while on the vent is as long as those 15 years the vent gave him - from putting an AC compressor in his suction machine, through having me open his ventilators and just by my describing all the wiring inside fixing it, and telling his doctors when he should go on antibiotics to playing the stock market right up to going to sleep forever - and all by the movement of his eyebrows. More about that another time.

Anver agreed to go on the vent with one condition - that when the time came I would not hesitate to turn off the ventilator and that I would do it myself. I asked him how would I know it was time and he said you will. I asked him how will I do it myself and he said... you will.

Fifteen years later when the time came I knew and I did. I was not in Karachi that day. I called home in the morning as was my norm any time I was out of Karachi. Anver was happily playing the stock market. He went to sleep at 2 pm as was his routine. My son was with him and Anver held on to his hand and looking upon his son's face, went to sleep. He did not wake up again.

Just 2 days earlier my son had got his first job, he had graduated from university 2 weeks before that and Anver's mother had died a month earlier. I don't think she could have borne his death - all her prayers in the last 20 years of her life had been for Anver, her first-born. His father had died 2 years earlier, he had had multiple strokes that robbed him of his language memory. He forgot everyone's names but Anver's...

At 4 pm my son called to say he could not wake up his father. I was a 1000 miles and a 2-hour plane journey away. The earliest flight was at 7 pm. It was the longest flight of my life. My son had taken Anver to hospital and the doctors had told me his condition was critical. He had no blood pressure, no pulse - and this time his pupils were not dilating fully.

I arrived at 10 pm. He had not woken even once since he had slept at 2 pm and even I could see how little was the dilation of his pupils. I don't know if he had any more life written for him but I knew he would not want that life. I did not have to make any decision, he had made it for me. I only wanted to know that when I turned off the ventilator if he would struggle to breathe. The doctor told me no. He also told me to take my time, there was no hurry.

So I said my goodbyes to him in all the ways I knew for as long as I wanted to. We all did; his son, his brothers and sister, the boys who took care of him day and night and every friend, family member, doctor, nurse and technician who was there at that time.

I had a 15 years reprieve and all the time in the world to say goodbye to him. What more could I ask for; what more could I possibly want. I turned off the ventilator and then I held him. There was no struggle, no spasm; just 2 breaths and a deep sigh and he was no more. And yet so much more...

I went to the graveyard to bury him and I dared anyone to tell me I should not... No one did. I kissed his face and covered it before they slid the cover on his grave and I dared anyone to tell me I should not... And no one did. As I turned away Anver's brother put his arms round my shoulders. I thought he was comforting me but he just turned me around and pointed to a grave right opposite Anver's. The tombstone said Anvery Begum! Even as tears were rolling down our faces we burst out laughing.

Many weeks later the Imam who had led Anver's burial prayers met me in the graveyard and said he had buried at least 1 person every day for the past 50 years but he had never had so many shocks in his life as he did when he buried Anver!

I began writing this last night and could not stop.

I recalled the marriage vows of the ‘goras’, 'in sickness and in health'; I will add 'for better or for worse'. He was so much the better...

[from Narrative Medicine]

About the co-author: Rakhshee Niazi is senior editor, Bookgroup, Karachi, Pakistan.

Acknowledgment: A version of this narrative was first published by the biomedical journal Neurology [December 2012].