Keep him as comfortable as you can...
In 1989 my husband developed a slight back pain and occasional vomiting. We did not worry about these symptoms until the day we found he was not able to pick up our baby grandchild.
And then began our visits to hospital: for biopsy, scanning and tests; blood transfusions, surgery, colostomy, intensive care, more transfusions, treatment of urinary infections, and breathlessness. After recovering from surgery he underwent radiation therapy and chemotherapy. This was followed by six monthly follow up visits to the cancer centre. Two years later the cancer recurred. He had a second colostomy and more chemotherapy. Finally in 1994 his doctor told us "Madam, nothing more can be done. Keep him as comfortable as you can and wait for the final good bye" .
We felt abandoned by a health care system that no longer wanted or needed us.
Until this time we had lived with uncertainty and in desperate hope for a cure . Now with pain becoming unbearable the uncertainty was all about when we could expect his death.
For many days I was a helpless witness to his suffering, unable to respond to his cries for pain relief or for a merciful death. It was only later that I learnt about morphine and learnt why it was not being used - because people thought it would be addictive and believed it would hasten death.
Learning about morphine was not enough.Was it available? Affordable? I was told 'Go to Bombay; go to Thriuvananthapuram; go to Trissur . Finally I was able to obtain the drug because I could arrange for a person to fly down every ten days with morphine from Mumbai - more than a thousand kilometres away . But what happens to those who do not have such resources? Cannot pain killers be made available within a reasonable distance ?
As the cancer progressed my husband developed persistent vomiting. I asked a doctor if inpatient admission was necessary. He replied that it was for us to decide. I then asked him what he would advice.
He answered, "Keep him at home because you will not be permitted inside the intensive care unit. You cannot be with him. You cannot attend on him as you do here. You are a nurse and can give him good care. The doctors can do nothing more."
Finally we kept him at home . What happens to relatives who feel unable to care for the patient at home? Is the intensive care unit the only answer? If yes, cannot at least one family member be allowed to stay with him?
Caring for him at home had its own difficulties. Well meaning visitors would upset him with their questions: 'What has the doctor said? Any hope? Why aren't you being shifted to hospital? Why don't you get a second opinion? You must go to Dr. XYZ. Your doctor is not good enough.Try homeopathy immediately. You will regret later.Why don't you conduct a Satya Narayana Pooja or a Nava Graha homam? Why don't you take him to Tirupathy? Lord
Balaji is the best doctor on earth. How many bottles of blood have you had? So the blood is not yours now! How long can you afford this?'
Should a patient be subject to this indignity ? A patient is not helped by intrusive questions and
unsolicited advice. He does not want to feel like a burden on the family. He needs to feel wanted,he needs to feel each day is worth living. And for this to be possible, he needs freedom from pain. Is it not possible to
1. Acknowledge that excruciating and crippling pain exists?
2. Learn how such pain can be alleviated?
3. Make pain killers available, and affordable?
4. Enable the family to care for the patient at home,
or to be with him in hospital?
5. Identify people from the community who can
support the family?
6. To care even for an 'incurable' patient?
Will the medical profession listen?
[Figure - 1]