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A Good Death - despite the NHS
- Margaret E Lupton (10 March 2007)
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In search of a good death
- Peter Bruggen, John Byng-Hall (12 March 2007)
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End of Life Care, Good death or A dignified death in West Bengal state of India
- Professor Pranab Kumar Bhattacharya, Bhattacharya Upasana, Bhattacharya Rupak, Bhattacharya Ritwik, Mukherjee Dahlia (20 March 2007)
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Margaret E Lupton, GP PR1 3NA
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The theme of this week's BMJ struck a personal chord for me as we achieved a good death for my own father in June 2006, but only because as a GP with a pharmacist husband we knew how to pull a few strings and get him home to die surrounded by his family in his own house. My father had prostate cancer which was diagnosed in 2003 with a Gleason score of 8 at diagnosis. He did very well for a few years with zoladex and then add-on casodex after that. Then on Wednesday 14th June at lunchtime when I was at work I received a very worried phone call from my younger sister - my father's breathing had suddenly deteriorated and she didn't know what to do. She couldn't get hold of the GP. There was only one option - to call an ambulance. We had seen my dad's condition worsen over the previous few weeks and we knew my dad was dying but he'd never talked about his mortality up to this point and we knew he hated hospitals, but also we thought he would want treatment to improve his quality of life. My sister called an ambulance and unfortunately because there had been no GP involvement my father was taken to A&E. We were in the A&E department for 8 hours. A CXR showed he had a pleural effusion. We eventually got transferred up to the Medical Assessment Unit where he waited in a corridor, still on his trolley. He was very uncomfortable and having great difficulty breathing. At around 11pm he saw the medical SHO who said he would need a chest drain, but they couldn't do it until morning because there wasn't enough emergency back up in case of complications. My father was so dyspnoeic he couldn't talk in sentences. At lunchtime the following day he finally got his chest drain. As a family we had a big Father's Day party planned for the Sunday (18th June). We'd had it planned for weeks. I have 5 siblings and my dad had 15 grandchildren. It would not be possible to get everyone round a hospital bed on an open ward and we were adamant the party would go ahead. My dad had not expressed his end of life wishes to us, but fortunately he had been seen that Thursday morning by one of the Palliative Care Team, who had talked to him at length in an abstract way about what he would want to achieve a good death. He was quite clear - he wanted to die at home, not in hospital. So, we negotiated getting the chest drain out. He was on oxygen, so he would need oxygen at home. The drain was still draining (he had a heavily blood-stained effusion). He was also had anaemic, so a transfusion had been organised. I spoke to the medical team about how we could get him home. The plan was that they would take out his drain just before he left the ward. We would need to organise some home oxygen (no problem for a GP and community pharmacist). He would need a hospital bed organising at home, a commode and a hoist. My sister-in-law just happened to know the district nurse co-ordinator through church. All these things slotted into place but then late on Friday afternoon, my dad's consultant noticed he'd gone off his legs - he'd completely lost the use of his right leg and he couldn't stand at all. The worry was that he had spinal cord compression and he might need radiotherapy before they would let him go. By some miracle an urgent MRI scan was arranged at 6pm on the Friday evening and there was no spinal cord compression. Everything was in place for him to go home on the Saturday morning. Back at my parents house the room was prepared for his return - my younger sister even painted the downstairs loo in anticpation of his arrival. We got my dad home and as soon as the paramedics brought him through the door, he asked for a glass of champagne. My mum had it chilling in the fridge. Not usually a champagne drinker, he decided to make an exception. My dad survived to have his Father's Day party, surrounded by his family and it was a very happy occasion. The district nurses came in twice a day over the following week and it became harder and harder to care for him - he was a big man and my sisters and I had to get him in the hoist a few times and onto the commode. My older sister's nurse training came in handy. My father died on Friday 23rd June 2006, surrounded by his wife, all of his children and 5 of his grandchildren. He died peacefully as the sun went down at 9pm. We toasted him with a glass of his favourite whisky as he took his last breath. He had a very good death. Competing interests: None declared |
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Peter Bruggen, retired psychiatrist NW3, John Byng-Hall
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Congratulations on the current issue which grasps so firmly the nettle of our professions’ relationship with dying. For far too long we have seen death as an adversary. Perhaps we could pursue the theme a little further. Our profession is, after all, firmly linked to problems now facing our species and the world: excessive length of life and excessive growth of population. Surely the least we could do is to be prepared to consider desisting from prolonging life (and suffering) of those who have had enough. The all too current practice of ours (neatly summarised in Paula Newton’s ‘A good death – but no thanks to the NHS’) will surely be deemed a gross cruelty by our descendants. We hope for legislation to free us to assist in the dying of those who wish to request it. Of course this may be a difficult and painful task; and of course there should be appropriate protocols, especially in relation to depression. One day, any of us might be wanting to ask for it ourselves. Peter Bruggen and John Byng-Hall Competing interests: None declared |
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Professor Pranab Kumar Bhattacharya, Professor, Dept of Pathology, Incharge of Histopathology, Inscharge of Cytogenetics, Institute of Post Graduate Medical Education &Research, 244A AJC Bose Road, Kolkata-20, W.B,India, Bhattacharya Upasana, Bhattacharya Rupak, Bhattacharya Ritwik, Mukherjee Dahlia
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Can a death be a good death? or a peaceful death, or a dignified death? Every death for a person who is dying is so painful & distressing. The person who is dying suffers extreme pain during his/her last few days and last hours of dying process unless he/she is deeply comatose and his/her pain perception is totally lost. So a good death must be a painless dignified spiritual death accepting the death as spiritually, where no active resuscitation is done to prolong the life of the dying person and where death becomes quick. Our Mom passed in a vegetative state following a brain stem death through a CVA. Our 72 year old mother, Bani Bhattacharya, was a long standing patient with Diabetes mellitus type II (since 1976) and was on human insulin (since 1995), hypertensive (since 1983) with concentratic LVH (since 1998) and Alzheimer's disease (since 2001) with psychiatric problem. She had a sudden onset of ischemic stroke on 17th April 2006 and was in deep coma. After primary resuscitation of her BP, she developed cerebral edema and convulsions in a govt. state general hospital at Panihati, Sodepur, and she was on that day transferred to R G Kar medical college Kolkata for a better diagnosis and management. The visiting Associate Professor of Medicine, under whom she was admitted through the emergency room, a neuro medicine Associate Professor, and an Assistant professor of cardiology of RG Kar Medical college who are all my friends and colleagues [They all have post doctoral degree] examined her and diagnosed her as brain dead. Next day her CT & MRI showed multiple infarction along her right middle cerebral artery artery, temporal and parietal lobe and in upper brain stem nuclei amygdala. She had multiple ventricular and supraventricular ectopics in her ECG and in her Holter ECG tracing with global ischemia. Her blood biochemistry results were all normal except her K+ which was 3.7 meq/l on her post admission day. She remained in deep coma for next nine days with treatment like mannitol, Dextrose(5%), Colpidegrol + Aspirin, Atorvastatin, Sucral fate, Phenobarbitone, Amlodipine 5mg, antibiotics, catheterization and NG tube feedings. She had extensor planter response on her lt side and hemiplegia of her lt. side body. Her pupil was constricted, indicating pontine damage. Her prognosis was marked as grave in her BHT. The visiting physician asked me whether I shall consider donating her organs to awaiting patients of Transplant in private or govt. hospitals and as such at least three party contacted me & tried to convince me for the same as soon as they received news from some other sources. Finally I had to behave with them very roughly and rudely. Surprisingly to all of us, mom started to awake, and she opened her eyelids, though her pupil remain fixed at a point, yawned, and glittered her mandible. She tried to drag her non-hemiplegic legs. But she remained non responsive to deep stimuli by supra orbital pressure. She moved her head also. She developed complete mute, decerebrate cogwheel rigidity of her all limbs in flexion position. Her up going planter became equivocal. As she did not receive insulin her blood sugar became raised to 350 mg/dl & on 20th day she started to receive human insulin. However, all her other blood biochemistry was normal including her electrolytes. She was in a vegetative state. Her vital signs Respiration, Blood pressure Pulse were normal and controlled . She was considered for Ventilator by my cardiologist and anesthetist colleague on the 3rd day of her admission but I refused as there was a single ventilator in that institute, her respiration was more or less normal and the treatment of life sustaining therapy is beyond my capacity economically & very expensive. She was discharged home on 7th May 2006 on my request and she was kept with all terminal care at home under supervision of an old general practioner. On 10th may 2006 at 1840 she expired.. In the case of our mom, I the first author, personally did not allow her to be put on an artificial respirator, though it was indicated, to give her a dignified death. She had a sudden death in her home. From this concept the “End of Life care” and “Palliative Care’ came. For a terminally ill patient it is not only the quality of life that is important but also the concept of good and dignified death is actually important as we authors consider it. Stien Hammer et al evaluated the most important factor to be considered at the end of life care from perspective of various “Have holders’ of society. These are “ Control of pain, adequate airways & oxygenation, Preparing for death, opportunities for closer of services offered to a dying person on completion of life , good relationship & gratitude of family with health care providers is most important as he/she may refuse to provide the care. Sometimes and often the dying person's close relatives request the health care providers to prolong the life of the dying person for indefinite period or for some period”. I am an experienced doctor on this issue in case of death of my Father in Law, who died of metastatic prostate cancer. A doctor who has enough knowledge of Medicine, Pharmacology, Critical care procedure can, however, prolong the life of a dying person with intervention and with life saving medicines no doubt, if the doctor wishes so, but I must say that all these are futile attempts or actions or interventions. On the one hand, the question of survival to discharge of the dying patient after a CPR may be doing good for the families, while, on the other, remains the psychological, social, emotional, economical, religious, and familial outcome of such a survival when the patient will remain in vegetative form. Moreover, the job for a doctor is really very much laborious--brain storming to monitor the dying persons vital signs, blood biochemistry, drug selections and what not? A question struck us. What is my goal to prolong the life of a dying person? Usually such unethical demands to prolong the life of a dying person used to come and today also come from persons of upper class society or upper middle class society, who, in my experience, are able to spend a lot on the palliative or end of life care in a nursing home or on private hospice care or in home set up care. I knew that application of technology could have keep my mother’s life more & more in vegetative form for years together. I knew that if I had taken the facilities of NICU, Intravascular thrombolysis therapy, a ventilator, she would probably have survived longer. I did not request my friends for it. Instead I sent her home to die a dignified death at home surrounded by her relatives. What would I gain if I would take all these very costly interventions?. A vegetative form of life for years? A painful life with all disabilities? All these would require extensive investment of money, setting up a tertiary care hospital with a stroke unit with neuro-interventional radiologists, Neuro-anasthesiologists, neurosurgeons, A stem cell biologist. The concept of Palliative care is there in countries with a good GDP such as the UK, USA, Canada, Australia. This concept in the state of West Bengal, India, in public hospitals is not present yet. However, a modified concept of such palliative care is on the way to being established in private run up business hospitals. However, it is a very good and profitable business with human death. Palliative care requires a totally different set up. It is no doubt a very good business and care for dying person or terminally ill people who have enough money to spend on such care. This care is not possible and will never be possible for the middle, low middle, and poor class people of the Indian and West Bengal Society, unless Government is kind enough to establish such palliative care units/ Hospitals with no cost or minimum user cost. But palliative care never means prolonging life. WHO define palliative care as an approach that can improve the quality of life and their treatment facing the problem associated with life threatening illness, through prevention and relief of suffering by means of early identification and carefully assessment of pain & other problems, physical, spiritual, clinical. What are the problems terminally ill patients may have, which need to be addressed by palliative care? From my experience as a board member of Oncology Team of IPGME&R/SSKM hospital, Kolkata, as a pathologist, I can say for a cancer patient these are: Care for depression- Most common The most important care is care for Pain. Actually freedom from pain is essential for a good and dignified death. In the last few days and hours of every death it is the pain & pain and more pain- if the patient does not die of deep coma. It is the air hunger in few hours before the death. But palliative care for dying patients is very costly. How much palliative care is possible at home? Data taken by authors show that in West Bengal in 2003, 3,22,300 death were registered ( Ref- Health on March -2004-05 Page 48) and major cause of death in Medical colleges are CVA and Cardiovascular diseases (34%), Burns 8%, COPD-6.25%, Poisoning- 5.6%, T.B-6.5%, Cancer-5.2% D.M-3.8%, Road Traffic Accident-3.7%, Diarrhoea-3.7%. In the District and subdivisional hospitals the data are like this: CVA and cardiovascular diseaesa-35%, Poisioning-8.50%, Respiratory Tract infection-6.40%, Burns-5.9%, COPD-5.9%, Diarrhoea-5.2%, Road Traffic Accident-5%, TB-5%. Other data show that 80% of deaths in the low middle, poor socioeconomic class occurs in the hospitals while 20% occur in the home. In contrast, in the middle socioeconomic class people 50% of deaths occur in nursing homes or in hospitals and the other 50% occur in home set up. But the picture is totally different in upper socioeconomic stratum, where 65% of deaths occur in home and 35% of deaths occur in nursing home set up. So analysis of the above data shows that low middle income class and poor socioeconomic class people in west Bengal prefer death in public set up hospitals as they are unable to provide costly palliative care at home for their dying relatives. Moreover, the current public care health system of West Bengal state of India does not have the concept of “ Palliative care” for terminally ill people. Even many of the medical colleges and almost all district and subdivisional hospitals do not have ventilators for respiratory support. The state of West Bengal Health care system has been facing severe crisis almost since the end of the 1990s. Whatever health care system exist in West Bengal, health care for dying patients has here very low priority compared with curative care. Palliative care is currently available for rich people. Palliative care requires trained physicians, trained nurses, trained technicians and general duty attendants. However, terminally ill people are dependent on their family members for their assistance, physical care, finance and also decision making which are not often possible by these socioeconomic class because of lack of education, because of traumatic grief, because of low self esteem, as well as low internal control, lack of spiritual belief, lack of social support, very poor economics, and young age. Furthermore, fear of death, prejudice, lack of comprehension from other family members often leaves terminally ill patients isolated. Moreover, there occurs family chaos, a family curse, if the head of the family/ earning member of the family/household becomes terminally ill. Added to this is the cost of medicine, cost of technology, cost of instruments, nurses/ Ayahs, and doctors' fees. So palliative care stands for the upper class population of the state. Many patients in the State of West Bengal cannot afford even the analgesia, the basic essential things for cancer; because of that they have the debt of paying hospital and doctors fees. They accept their prognosis and uncertainty of death. Many patients say, ”I must wait until God calls me at His home”. How can pain be treated in palliative care? It is most often required for a
cancer patient.
According to myself, try at first analgesic drugs. Choice of drugs
should be based on severity of pain, not on staging of the disease. At
first, give non-opiod drugs ± Adjuvant and if pain persisting in step 2
give Opoid± Non opoid ± Adjuvant. Here concentration of codeine or
dihydrocodeine with aspirin or paracetamol and in step 3 give
Opoid ± nonopoid_ TCA. TCA are always helpful for neuropathic pain. The
common adjuvants analgesic for cancer patients may be In order for care for dying patients it is essential to
diagnose dying. However, dying is a very complex process. In a hospital
setting where the culture is often focused on “ Cure” and there is
continuation of invasive procedure, investigations & treatment, there
is always a reluctance to make the diagnosis of Dying if any hope of
improvement exists and even more so if no definitative diagnosis has been
made for the dying person. Recognizing the sign and symptoms hence is very
important clinical skill in diagnosing dying. In case of cancer patient the
following signs are often associated with dying Diagnosing dying in heart failure is very important. More then 60,000
patients die in India of heart failure in each year. As no real data exist
for West Bengal state, we authors cannot state how many people die of
heart failure. Another reason is that in death in West Bengal The cause of
death is written by Doctors as “ Cardio respiratory Failure”. The exact
cause of death is never mentioned in death certificate. Most patients
dying of heart failure have poorly controlled symptoms- notably
breathlessness, chest pain but also mental distress and a range of non-cardiac symptoms. A dying patient in heart failure usually wishes to have
just symptomscontrol rather then any invasive treatment. But predicting when
death will come is very difficult. Worsening of heart failure is not
always the result of of an inexorable progression of the underlying
pathology. In many cases however reversible causes exists like a chest
infection, like a sepsis, anemia or an arrhythmia or use of a suboptimal
inappropriate use of drugs for heart failure. The correction of the causes
may induce worthwhile symptomatic remission. Use of standard diuretics
like Frusemide (Lasix), Use of Inotrops (Like Dopamine, Dobutamine) and
Vasodilators in varied and appropriate doses can produce improvement and
can prevent death. So worsening heart failure causes have to be identified
Once the dying of patient has been diagnosed the following has to be
considered-
The goal of care for a person dying should be
According to authors' opinion, patients who are at a dying phase of cancer should not be subjected to cardiopulmonary resuscitation. That brings sufferings to patient much with pain, agitation, hope to party, and attempts are always futile. Regular observation should be made and symptoms control monitored including pain & agitation. Attendance to mouth care is also essential in the dying person and family can be encouraged to give sips of water or just moisten the mouth & tongue with a wet sponge. Catherization may be needed if there is incontinence or retention of urine. Bowel care is rarely needed.
Diagnosis indicators of Early and Late death in Children
The end of life care in case of children must not be in a hospital but in the home. If possible with full support from the hospital team to assist with clinical protocol, continuity of care, medical supervision & palliative care including pain management. But it is distressing to say that most of the child in state of West Bengal are dying in a Hospital. What a Mother wants “ I held in my arm when he/she entered in this world and I will held him/her when he/she will leave this world”. There is also the wants of a dying child. Terminally ill children must not be given any futile treatment which are often given by pediatricians. These children must be allowed to die in their parent's lap or in their loved one’s lap. The dying children do not need an ICU or NICU care. Care must be given by by treating physician/pediatrician if required at free of Fees. Common symptoms the child suffers for the last 3-4 weeks of life are Pain & severe pain -92%, Weakness 0%, Wt.Loss 75%, Anorexia 70%, Decreased Mobility, Nausea, Constipation, Vomiting -58%, Sleeplessness, anxiety, difficulty in speaking, Difficulty in Swallowing, decreased vision, Dysponea-60%. Even even a nurse who is trained in pediatric care unit can solve all these problems the aim must be that the child should be kept peaceful of few weeks of his/her death. Less pain -Please. Withdrawal of life support= A good percentage of deaths occur in the intensive care unit of public or private hospitals or in nursing homes of this state after withdrawal of mechanical life support like mechanical ventilators or life saving medicines & other interventions. Both the clinicians and family relatives in these cases make the decision about withdrawal of life support and in 90% cases the family members in conjunction with doctors make such a vital decision. Here often conflict may arise between the clinicians and family members. In most cases mechanical life support is futile attempt in the present authors' opinion. It is very difficult for the family members to face death of loved one if the family has enough money to bear the expenses of life support. On the other hand, it becomes mostly bothersome and brainstorm taxation for the doctor or for the team to continue the further life support treatment to critically ill patients, who have very low likelihood of survival and life sustaining intervention appears as futile. In 1991, the American Thoracic Association defined a life sustaining intervention as futile “ If reasoning and experiences indicate that the intervention would be highly to result a meaningful survival for patients” However, no doubt controversies always will exist about what constitutes a futile attempt & futile intervention? Physician may be also biased to make unilateral judgment about value of a patient’s life. In fact the truth is that with skilful intervention, life support, rational judgment and full application of knowledge on life support from the end of a physician may keep the dying patients alive for years together. The total venture is on the part of physician. But the question stands why a physician will take trouble for a patient? The goal of withdrawing the life support when the death is expected is to remove the treatment that are no longer desired or indicated. Any treatment may be withheld or withdrawn and most illusive concur that there is no differences between the withholding or withdrawing of the life support treatment. The most critical issue is withdrawal of Ventilators. A dying patient may receive sedatives and analgesic that can fully relive pain and sufferings of dying patients. In addition of receiving these medications however in times patients for whom mechanical ventilators is being withdrawn are given neuromuscular blocking agents at the time of withdrawal to make the death comfortable and peaceful. Actually the neuromuscular blocking agents have no analgesic or sedative
properties and hence should never be used in absence of sedation or
analgesia. The ethical issues of using such neuromuscular blocking agents
depends on category of patients
Authors-:Professor. Pranab Kumar Bhattacharya MD (cal), FIC path(Ind.), Professor, Dept. of pathology, Incharge of Histopathology,Unit,; Incharge of Cytogenetics; Supervisor Incharge of Blood Bank, Ex-Incharge Ronald Ross 24 Hours Malaria Clinic, Institute of Post Graduate Medical Education & Research[ IPGME&R] 244A AJC Bose Road, Kolkata-20, India ** Miss Upasana Bhattacharya Student,Delhi public School-Rubipark, Kolkata ***MR Rupak Bhattacharya BSC(Cal), MSC(JU),7/51 purbapalli, Po= Sodepur, Dist=24 parganas[ North,] West Bengal, Kolkata-110, India ****MR. Ritwik Bhattacharya B.Com(Cal) 7/51 purbapalli, Po= Sodepur, Dist=24 parganas North, West Bengal,Kolkata-110, India ***** Mrs. Dalihia Mukherjee BA (Hons).Cal university Resident of Swamizi Nagar, Habra 24 parganas (North) , West Bengal India References 1)Health on March 2004-2005 of state Bureue of Health intelligence, directorate of Health Services, government of West Bengal,- Page48 2 Groene would.H. Johana, Heide. Agnes. Vander- New Eng.J. Med- 342N8P551;2000. Acknowledgement= To Mrs Sapna Bhattacharya of 7/51 Purbapalli, Po=Sodepur, District =24 Parganas North, West Bengal who took all last palliative care for our late Mother. Competing interests: None declared |
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