Patient’s relatives should be involved in decision making while managing terminally ill patients
Presentation on “How Doctors Die” at PHL & ICHPE Conferences
Patient’s relatives should be
involved in decision making while
managing terminally ill patients
Tell the family Truth which will reduce the incidents
of violence against HCPs and HCFs-Shaukat Ali Jawaid
HYDERABAD & LAHORE: While managing terminally ill patients, members of the medical profession must involve the family members in decision making. This will go a long way in reducing the incidents of violence against the healthcare professionals as well as healthcare facilities. Most of such incidents take place due to miscommunication. This was the message conveyed by Mr. Shaukat Ali Jawaid Chief Editor of Pakistan Journal of Medical Sciences and Pulse International while speaking on “How Doctors Die” at the Pakistan Hypertension League conference at Hyderabad on October 30th 2022. He made the same presentation at ICHPE 2022 organized by University College of Medicine & Dentistry at University of Lahore premises on November 3rd 2022.
In the very beginning of his presentation he acknowledged Dr. Ken Murray Assistant Professor of Family Medicine at USC who first used this provocative title many years ago. It attracted lot of debate and large number of healthcare professionals working in Intensive Care Units participated. This Essay, Mr.Shaukat Ali Jawaid said was shared with me by Mr. Tom Lang Executive Committee member of World Association of Medical Editors(WAME) after reading the chapter about the death of my mother in my autobiography which I had shared with him. This essay by Ken Murray was based on case histories related to last moments of patients including doctors.
Doctors, it was stated, know “limits of modern medicine “hence they do not ask for heroic measures when it is their turn to leave this world. Don’t break the ribs in an attempt to resuscitate with CPR it happens if CPR is done right. They do not bring in cutting edge of technology to bear on grievously ill person near the end of life. What usually happens is “patients in critical condition are cut open, perforated with tubes, hooked up to machines and assaulted with drugs.”
Dr. Ken Murray had further written that medical care should not be administered which makes patient suffer in agony. For this reason some physicians in the developed world have stopped practicing in hospital care. When the patient is serious, Dr. Ken Murray opined, family members wish the doctors to “do anything that is reasonable” but the family members themselves do not know what is reasonable. Hence, at times poor knowledge, misguided expectations lead to lot of bad decisions by healthcare professionals. Ken Murray narrated the case of an Attorney from a famous political family who developed painful sores on her foot. He did everything which he could to keep her away from resorting to surgery. She went to another doctor “who decided to perform bypass surgery in her chronically clogged blood vessels in both legs which failed to restore circulation.” Eventually the surgical wound did not heal, her feet became Gangrenous and she endured bilateral leg amputation.
Dr. Ken Murray in his essay had suggested that doctors must discuss with patients, family members, end of life choices”. Ken Murray says that “I discuss issues with family members of patients in layman’s terms that portrayed downside clearly. If patient still insists on treatment which I consider is pointless or harmful, I offer to transfer the care to other doctors or hospital. Doctors, he further wrote, often resort to heroic interventions and procedures either to make money, or they are fearful of litigation and do whatever they are asked to avoid getting into trouble. Patients admitted in Hospice care often live longer than people with the same disease who are seeking active cure.
After having shared the thoughts of Ken Murray, Mr.Shaukat Ali Jawaid narrated the story of his mother who spent last few days in ICU in lot of misery before her death which still haunts him, he remarked. I try to forget all that but the scene is often recreated and I have to spend sleepless nights. It has seriously affected my health and my professional working. My mother often used to tell us, Mr. Shaukat Ali Jawaid recalled that “Do not take me to the hospital where doctors puncture the body with needles everywhere, do lot of un-necessary procedures and patient dies without getting a sip of water”. She was diabetic for over twenty years, well controlled but once she had an episode of hypoglycemia, it was beginning of her journey to the other world. Once she developed severe chest infection it did not resolve despite potential antimicrobial agents, other medications. She stopped eating, taking fluids. She had to be hospitalized, admitted to ICU where adequate facilities, we later realized, did not exist. Prof. Tipu Sultan an eminent critical care specialist and former Principal of DMC had some time ago speaking at a conference disclosed that over 70% of ICUs in Karachi do not have qualified trained medical and nursing staff and the proper equipment. In fact these can be termed as reservoirs of infection. My mother’s condition was deteriorating daily but doctors kept on giving false assurances to family members that she was recovering. They even took permission from my brother in my absence to do endoscopy which I think was not needed at all.
I could not talk to her for almost a week while she was in ICU which I regret the most. I last saw her at 5.00 PM and she was looking in my eyes with tubes all over the body saying “I asked you do not take me to the hospital but you did not listen” and I start crying. I realized that it was all over despite the doctor’s assurance to family members but I told them “it was all over”. I took my brother to the graveyard, identified my mother’s last resting place. I returned home at 6.30 PM and received message from the hospital at 7.00PM she had left this world. I still wonder why the doctors did not bother to tell the truth to the family members though I knew what was going on and the eventual prognosis. I feel sorry because I could not fulfil my mother’s wish “to let her die peacefully at home”.
Most healthcare professionals Mr.Shaukat Ali Jawaid stated, try to prolong life of patients with good intentions. However, my sincere advice to them is “Do not prolong miserly and suffering of a dying patient unnecessarily by doing overzealous procedures and interventions. Try to minimize agony of the patient and involve the family members in patient management. Tell them the Truth so that family gets ready for the bad news.“ Remember Death is an “Exit Door” through which we all have to pass soon or later. Do not make Death more expensive.
He shared yet another story wherein doctors treating a young child of thirteen years old at a Five Star Hospital were excited because they had been successful to make the correct diagnosis after getting lot of investigations done overseas. The child was suffering from a congenital disease. The poor family had to sell their small house for sixteen lac rupees in 90s to save the child. When I asked them what is the treatment, the reply was no treatment is available so far. At this I asked the treating doctors what was the fun in spending so much money which has resulted in the “Economic Death of the family”. If they were so keen to do this research work, they should have arranged funding themselves or hospital could have provided funding instead of asking the family to arrange funds for treatment of their child from a disease which has no treatment.
Continuing Mr.Shaukat Ali Jawaid said that in the past patients used to die alone but now they die heavily investigated, which often leads to the economic death of the families as well. Thanks to the “Greedy” healthcare professionals and hospital owners infected with materialistic virus. He made a passionate plea to all the participants that let us all educate the healthcare professionals including doctors, nurses, paramedics and technicians on how to handle terminally ill patients to ensure that they earn “ Death with Dignity”.
Mr.Shaukat Ali Jawaid then shared the stories of two eminent medical personalities of their last few days and how they died. Prof. IA a very dear friend, who served as Principal of various medical colleges was diagnosed to be suffering from” Triple Vessel Disease”. He decided that he is not going to get his chest opened, refused CABG and also told his family members of his wish. He said, he would like to continue of medications as long as he can. He one day died peacefully at home. He shared the story of yet another Professor of Medicine who also served as Principal of various medical colleges, was founder of one of the medical colleges in Pakistan, a renowned Diabetologist and medical educationist. He wished to die at home not in hospital. He was also a dear friend from whom I learnt a lot. I went to see him two months before his death. He was bedridden for few weeks. One of the family members an eminent Justice told me that “ Uncle has wished that he would like to die at home peacefully rather than in the hospital, hence he is being looked after and we respect his wish.” He also died at home peacefully.
My question here is that both these eminent medical personalities belonged to affluent class, could afford to get admitted in any hospital and also afford the best treatment but look at the decision they had taken. It has a message for all of us. Continuing Mr.Shaukat Ali Jawaid said that fortunately the situation is much better in small towns, cities and rural areas as compared to the big cities. In most cases doctors, healthcare facilities knowing their limitations in such situations, advice the family to take their patients home, take care as much as they can and let them leave this world peacefully which is not the case in big cities. Here most often it is greed and love for making more money which dictates the decisions by doctors and healthcare facilities. But they all must remember that even Sikandar-e-Azam had left this world empty hands. “Coffin has no Pockets.”
After the presentation at PHL meeting in Hyderabad, many participants felt it was an important issue which needs to be discussed in detail and debated. At times the situation is not so easy to handle and manage. The speaker has drawn our attention to this highly sensitive but important issues which needs further discussion. At ICHPE 2022 conference at Lahore the Chairperson Prof. Vishna Devi from Malaysia remarked that end of life issues are extremely important and there are many important issues related to this which deserve an in-depth study and discussion among the healthcare professionals.