Thank you for the time with mother

14/10/2019

When I met her the first time, she was on a wheelchair, in severe pain and was being treated for pancreatic cancer for nearly three years. Her husband, her primary caregiver, was with her.
I studied her papers and examined her. I asked her if her ascites (fluid in the abdomen) was causing her discomfort. She was willing to manage.
The next contact was about 12 days later, when the husband called. She had been recommended an MRI. He asked me if it made sense to push her through yet another MRI. Then he came over to talk to me .
Their two sons were abroad. Financially, they were comfortable. They lived on the fourth floor and the building had no lift. Every hospital visit meant maneuvering her down the stairs. He was willing to do that. But to do that every time? Won’t it be difficult for him to manage her at home?

Dealing with at-home care

I briefed him about the potential challenges of at-home care. Perhaps it was time for him to have a frank conversation with her doctor about the prognosis?
One week later I got a request to visit the patient at home. The doctor had said that her treatment was now at a palliative phase. Thanks to that, the husband had a better idea of my role as a palliative care doctor.
I examined the patient. It was obvious that her disease was progressing rapidly. She looked jaundiced. No, she still did not want her ascites to be drained. She looked at peace, pretty even.
She had just one fear. Occasionally, when she got up, she felt as if she was about to fall. Now that I was with her, I encouraged her to try and get up. With my help, she did.
She was stumbling. It was clear to me that she was wobbly. After safely putting her back in bed, I suggested several measures. She was not to be allowed to get up and walk without support. Never. And she needed a hospital bed with rail guards.
His brother walked with me as I took the stairs down. He was not sure if the sons had the correct picture. I suggested he could share my number with one of them and I would be happy to brief them. He was relieved.
That evening, before I could speak to the son, I got a call from the brother. The patient had had a fall. They had rushed her to the ICU in a nearby hospital.

Spend time together now

While the immediate injury was being taken care of at the hospital, I got a call from the son in the US. I briefed him fully and answered his questions. He said he was coming to India towards the end of the month, three weeks away. If he wanted to spend some quality time with his mother, I suggested he should reach sooner.
The next call I received was again from the same son but after he had reached the hospital in Pune. He had met his mother and she had recognized him, smiled at him. He was happy.
A couple of days later, the husband’s brother called again. She was not doing well at all. The second son too was on his way.
He too got to meet mother, but she was already on ventilator. The family had a discussion with the doctor. How long should she remain on the ventilator? The sons decided to wait until the next evening.
But she did not wait. She passed away the next morning, in the ICU.

If only ...

A few days later, the son spoke to me.
“We knew her disease was serious. She was so keen to be at home. Dad was trying to make it possible. I desperately wanted her to get comfort care, like what we get in the US. Then after all those months of suffering, she got to meet you. Thank you for asking me to come down sooner than I was planning to. I got to meet her, spend some time with her.” He was sobbing bitterly.
I told him that all I did was try to make the journey smooth. For the traveler and her dear ones who were around to see her off. She was gone. But those moments together, those memories would stay.
When it comes to a terminal condition, is it possible to prognosticate the end with any certainty? Would the ending have been less painful for all, had there been franker conversations sooner? Could they have then made better use of the time with her?

Dr Priyadarshini Kulkarni, Palliative Medicine Consultant, Pune. Founder, EaseandSupport

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6 Comments

Khurshid Bhalla

14/10/2019 04:58:13 pm

1. Many patients are known to "wait" ....for a loved one to arrive, or a wedding, etc....they wait physically, emotionally and spiritually. The very next day, they seem to slip away in peace. Any palliative centre nurses have seen this so often.
2. Children living abroad is common today. They have a paucity of time and funds to come again. This question is asked very often, and until the last stages, is a very difficult one for the doctor to answer.
3. An elderly aunt was suffering from skin cancer. Her daughter came from Australia, spent two weeks, and flew back. Some weeks later, when I realised she was dying, i called her to say, if you want to see your mother, you should come now.....and was appalled at her reply..."what is there to see now. I've already seen her some time ago." I said.."but don't you think she may want to see you?"
But the girl waited till she heard her mother had died, and then bought the earliest ticket she could get for the next week.
4. When my father was in last stages of prostate cancer, the surgeons, chemotherapists, radiologists, who had been treating him for the last many years, suddenly stopped coming to see him. He himself being a senior doctor of the same hospital, kept asking us why they were not coming to see him.
I think its because they don't know what to say any more. Just because they have exhausted their treatment options, they drop the patient like a hot brick. The patient has developed a close and trusting bond with the chemotherapist over a year or two, and many have asked me, why doesn't Dr. ____come to see me any more? They are simply not even given appointments to consult and speak to him! This really hurts the patient. And that's how he realises that he is dying. Cruel?
4. We often brush away talking of death. Even if the patient tries to broach the topic, we cover it up with a hearty, oh, you're going to be fine!
Have you thought he/she may be longing to talk about his/her own demise? May want to leave some heartfelt decisions or words? May want to actually say goodbye, but we don't let them?
Please don't brush it under the carpet. Let the dying discuss their final journey with you. That may be the most beautiful memory you have left.

Dr Priyadarshini Kulkarni

14/10/2019 05:44:48 pm

Dear Dr Bhalla,
absolutely agree with points raised by you. Our community needs to do few things
1. look at death due to prolonged illness as a natural extension of life
2. after doing many rounds of chemo / taken suggested treatment, if there is no noticeable improvement.. patient or family should initiated the dialogue with treating doctor about what we call in palliative care as " goal of treatment"... many a times it changes from "curative to Palliative ". this simply means there are limitations to treatment options for "cure" but not limitations for "care". this is the time when aggressive care is needed - mainly from family members - to make most of precious time
3. doctors - especially junior doctors are not trained to communicate in situations where patient as well as family members are looking at some frank discussions with treating doctor / their team members about life span of the patient.They need to know how much time their patient has, will they suffer, will there be pain, and if yes.. can that be managed etc- somewhere in the technologically improved medical practice, we as a society have started considering "death" as a failure of medicine..
4. My suggesting is to at least explore option of palliative care when you are confused / do not know what is the best decision - these teams are trained to look at issues from physical, social, psychological as well as spiritual angle. Involving them might help you handle the situation in much better way. unfortunately awareness about contribution made by palliative care in such situation is not known to many and therefore they do not opt for the same

Pradeep Kulkarni

14/10/2019 07:28:43 pm

Excellent article. Society is not ready to accept the eventuality. Palliative care consultation should be suggested.

Rita Singh

14/10/2019 08:52:37 pm

good heart touching article. our Indian medical practitioner nd Hospital eed to be more transparent and talk to the patient openly. such cancer patients or any patient suffering from such disease where there is a very limited period of survival doctors must talk to them even the hospitals must have enough number of councillors who will visit the patient and talk to the patient it is must.

Gus Mendonca

15/10/2019 12:06:12 pm

It is so very important for humans to be comforable with the terms 'dying' and death'. Palliative care of the terminally ill patient should be undertaken with deep emathy and understanding, with caretakers moving out of their comfort zones and doiong what is best for the patient in the circumstances.

Medication serves to heal the body of the terminally ill patient. Spirituality helps family members and friends to bestow love and palliative care with the right frame of mind, in order to heal the SOUL of the patient and to ease their passage to death. Rather than speak about the inevitable END'....family members and friends should dwell nostalgically on the journey of life, recalling beautiful memories created enroute.

Lofty eulogies and displays of grief and concern are meaningless as an afterthought......as this show of affection would have meant a lot more when the loved one was alive and conscious. It is so important to act in the present moment with 'mindfulness' and 'genuine love'.

Mehul Panjuani

31/10/2019 05:52:51 pm

Thoughtful article. We should thank god for the quality time we spend with our parents because these would be the most cherished memories in the future.

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