August 09, 2016 00:46 IST
When the time comes, we should take palliative care take charge and learn to let go.
A year ago, when I walked into the Intensive Care Unit and saw my father wailing and roiling in pain, all I wanted to do was run, somewhere far, where his cries wouldn’t reach me.
My 84-year-old father, my best friend, was enduring raw, intrusive medical procedures against his own wish. All skin and bones, he looked defenceless and at the mercy of doctors, his arms tied up, vulnerable, and agonised.
My father, the only person who could love me even when I wasn’t lovable; the one who taught me the rules of living simply, the one who told me my first stories during our evening walks, with whom I felt protected walking in the world.
The sight of him stripped of any sense of comfort or dignity on that hospital bed was unbearable. His frail body slipped out of his hospital dress, bared at the shoulder. He winced as a needle stuck in his neck wedged into the flesh when he rolled his head on the pillow in distress.
A feeding tube ran in through his nose, and went down his throat into his stomach.Catheter tubes were inserted into his bladder to drain out urine; another tube, attached to a suction pump, was passed down his windpipe, and used to remove fluid from the airway. Medics had attached monitoring equipment to measure bodily functions; wires ran out taking readings from his vital organs to display screens; showing his heart and pulse rate, airflow to his lung, oxygen levels and body temperature.
Tubes were inserted intravenously to supply essential fluids and antibiotics to cure a suspected blood infection. But no sedatives or painkillers were administered for fear his weak heart could not take more chemicals. The needle jammed into his central line – a really painful procedure I learnt — made it impossible for him to turn his head to the left. Dialysis took over the job as his kidneys had resigned to the idea of his dying. The machine cleansed his blood every night, during the last five nights, his heart protesting with two mild cardiac arrests.
Hard to convince
It was a harrowing experience, having to watch him suffer the insufferable. I stood by his side trying to convince all those who seemed to have a say on his life that it was a cruel line of treatment they were imposing. I knew he had always wanted to die peacefully and painlessly, but neither the doctors nor other close relatives, who were in charge before I could reach his side, would listen.
‘‘Is there hope of him getting well and out of hospital alive?’’ I asked the duty doctor the next morning, crushing sadness, when my mother was not around.
‘‘He has multiple organ failure,’’ the doctor said. ‘‘Over that, he has blood and urinary infection. His kidneys are not functioning. The situation is bad.’’
‘‘If the situation is that bad, why can’t you get rid of all these wires and needles, and give him some sedative so he can sleep?’’ I asked. ‘‘And why continue with dialysis, something so painful and risky?’’
‘‘We can’t stop treatment. We are supposed to do everything we can to keep the patient alive,’’ he said.
For whose benefit?
I didn’t get it. Why keep the patient alive for a few more days, if it involved excruciating pain? Keep the patient alive for whose benefit? Was he a mere specimen for medical students who came around to learn practical lessons each day? But I didn’t want to infuriate the doctors in whose hands we had surrendered his body, and who had broken down his body into isolated segments only they could put back together again, if at all. He was rolled into the hospital as one semi-conscious whole three days ago!
I was desperate to change something that would provide even the slightest relief. ‘‘How about giving some medication to give him pain relief? Surely you must have some medicine for that?’’
‘‘It is risky. Last night he had a mild cardiac arrest during dialysis. He is already under heavy medication for the blood infection. It could get complicated,’’ the doctor said, looking at me with sympathy.
‘‘Complicated? You mean he could die?’’ I asked, feeling more helpless. No reply, except a kind look.
A few feet away, my father was heaving and groaning with heart- wrenching constancy. Nurses and student-doctors walked around doing their job, deaf and blind to the cries from the ward.
‘‘Please give him some medication for pain relief. Please, please, please,’’ I begged, wanting to cry out loud. The doctor smiled at my concern.
‘‘I will ask my senior doctor tomorrow if we can give him some sedative,’’ he said.
When I went into the ICU the same evening, my father was sleeping. ‘‘We have given him a mild dose of pain relief medication,’’ the same doctor I had made the request that morning said. I felt some relief.
The next morning, and another dialysis later, my father was again writhing in pain and distressed beyond words. I begged the senior doctor in whose charge my father was for more pain relief as she sat flipping through his file.‘‘He can’t be feeling so much pain after all the medication we give him. He would be too drowsy to feel any. He is being fussy. He starts screaming even when the nurses are cleaning him up,’’ she said.
Exactly my point, I thought. If it is hurting him so much, why can’t you pull out those dreadful needles and let him die in peace? But I wasn’t the doctor, and at that point in time I wasn’t very clear about what was going on as against what better could be done.
That evening I walked to his bedside, holding back my fear and despair. He was whimpering, with half-open eyes, looking around, but not seeing me. The trauma and medication had affected his sight. I was distraught watching him suffer thus, stripped of dignity. I remembered the time my grandmother was bedridden and fed with a tube, years ago. When she cried in pain, when the nurse changed her feeding tube, my father would run out of the house, out of the gate, covering his ears. And here he was suffering the same fate, only much worse.
Another morning, and after another session of dialysis, neither my mother nor me had the courage or the heart to go in. We could only see him twice a day, for five minutes in the mornings and five in the evenings. Only one person was allowed to visit at a time. Mornings after dialysis were living hell for him. I wanted to go in later when he was asleep. Adarsh, a young neighbour who used to take care of my father in his last days much like a grandson, went in. He came back upset, said my father was beseeching God in his restiveness.
The sheer torture
The same evening I walked into the ward after my mother had come out. Even as I was approaching his bed I heard him plead, his voice slurred. ’’Please don’t torture me.’’ His swollen palms were red, bearing evidence of the many failed attempts made to get a vein. His arms were tied to the side of the cot so he wouldn’t pull out the tubes when he was more conscious. Through his half-open eyes I could see his pupils dashed around blindly. My heart bled each time he moaned. I wanted to die in his place.
Somehow, holding back tears, I stood by his side, and slipped my fingers into his folded hand, which lay inert by his side. He gently closed his hand around my trembling fingers. I knew then that even in his grave suffering, he was trying to comfort me as only a father can. His eyelids twitched, as if to tell me he was awake and listening but unable to respond.
‘‘Don’t worry father,’’ I said in his ears. ‘‘I am trying to get you out of this place. Meanwhile, please pray, so you won’t feel much pain.’’ I couldn’t say more. When I walked out, my mother went in to see her husband of fifty- plus years. ‘‘He isn’t looking any better,’’ she said with moist eyes when she came out. We sat on chairs outside the ward, among scores of visitors waiting for their turn to go in and see their loved ones, or were there to hand over food or medicines.
‘‘We can’t even sit with him. If he were in a room, I could speak to him and make him feel better,’’ my mother said, anguish riding over love.
‘‘I think he will come home safely. He is only 84. I am sure he will live for at least a few more years,’’ she said, as if to assure me we were in the right place.
I didn’t think so. But a look at her face, and I decided to hold my tongue. She looked tired and confused. She was diabetic, had high blood pressure and cholesterol. She had been looking after my father for many years, administering his insulin shots, checking his blood sugar with the home kit, rushing him to hospital in the ambulance in the middle of the night when he became delirious with blood sugar dips. I couldn’t distress her more, not then.
My father was attached to my mother, and fully dependent on her in his last few years. I remember how, a few weeks ago, in a hospital closer home, before he was referred to this big place, he told nurses, ‘‘She is my mother,’’ pointing to his own wife. He was mixed-up from frequent hospitalisation, disoriented in time and place.
My eyes were tearing up. I didn’t want my mother to see me cry. I walked across the dim waiting room as it started raining and stared into the dark outside the window, where I stood wiping my tears, training my mind for another sleepless night when my father would be put through another torturous round of dialysis.
‘‘Every night I go to bed praying to God to give me a peaceful death in my sleep, a painless quick death,’’ his words from the past made me desperate to get him out of the place.
But I didn’t know what options I had to stop his pain, or whether I had any. Worried to hell, I stood there with no idea of the existence of something called palliative care.
One more night later, another duty doctor called me outside the ward and told me the blood report had arrived that morning and it said my father didn’t have any blood infection, for which they were treating him with strong drugs for a week now! Could they not have waited till the report came before starting such painful medication?
I went in to see my father, heartbroken and angry about the situation. He was faintly pleading to no one in particular, ‘‘Please don’t torture me.’’ I died a thousand deaths in that single moment.
Forms to be filled
I requested the doctor to stop all painful treatment immediately and prescribe painkillers instead. He said he too wanted to do that but first I should fill up the required forms. I did so immediately.
Before I left the ward, I had promised father I would shift him back home at the earliest. I asked my father to pray in the meantime. He started chanting prayers almost immediately. He could hear us all the while! Tears gushed out of my eyes.
An hour later, they called me again to the ICU to inform me that my father had died of a cardiac arrest. When I saw him lie still like an empty shell, shocked and relieved in death, my faith in humanity was crushed to dust. My father passed away a day before we could move him to palliative care, even though I came across the word only the day he died. I will regret it for the rest of my life.
A year on, I still cannot forget his helpless days on that hospital bed. I cannot get over his cries. I get sudden weeping spells in the middle of a workday.
A new direction
But my father did not pass away without pointing me in a new direction – palliative Care – a term I heard the morning he died. It was an old friend of his, a much younger person than him, who I had called for advice. He said: ‘‘Oh no. We need to give him palliative care immediately. Let me call a doctor friend of mine who is into pain relief. We will move him out at the earliest. I had felt hope for the first time, after many days when I heard those words. But a couple of hours later, my father passed away.
A year since I know something as beautiful and gentle as palliative care was available as a treatment option, close by, just a call away.
My father died a painful death due to overtreatment after enduring seven days of cruel life-sustaining clinical interventions in a private medical college hospital, alone.
And all he wanted to do in the end was sleep, not eat or drink, just rest and slide into the other world surrounded by his loved ones, with the ease of falling asleep, dying a natural death.
(The author, based in Mumbai, is working on a book on the quality of elderly deaths in India. She is involved in a campaign led by Pallium India to make the end of life painless for the terminally ill. E-mail: firstname.lastname@example.org )