This year
approximately 56 million people will die globally, roughly 2/3rds of them in
hospitals. More people are dying today of chronic diseases, and the average
person can expect to spend the last decade of his life being seriously ill and
under constant medical treatment. This is the unfortunate downside of extended
life spans: the life expectancy in 1900 was 32 years, today it is 71.80 years.
Studies world wide, however, have shown that end of life medical interventions are
largely unnecessary and ineffective, as, of those who die in hospitals fully
1/3rd will do so in ICUs and 1/5th will have undergone
redundant operations in the last month of their lives. The conventional
aggressive interventions at this stage do not help. How have things come to
such a sorry pass with all the advances in modern medicine?
Today, end of life
care has become synonymous with hospitalisation; in more seriously terminal
cases a second alternative is gradually emerging- assisted dying, what we in
India erroneously term euthanasia. These are the only two choices available.
But it need not be so, for there is a third choice – palliative care. This
option means engaging with the terminally ill to provide care ( not just
medical interventions) outside hospitals, at home or in a hospice. Studies
world wide have established firmly that those who die in hospitals experience
more pain, trauma and depression than those who pass away at home. Studies also
show that palliative care increases terminal life spans by as much as a third
compared to hospital care. Why, then, does medicine continue to dictate the
last days of our lives?
The answer lies
partially in the way our doctors are trained and conditioned. Their education
and the Hippocrates oath conditions them to save lives at all costs, even when
they are acutely aware that this is futile. This blind spot is compounded by
the fact that, ever since the demise of the institution of the “family doctor”
and its substitution by corporate hospitals, doctors have forgotten the fine
art of having a conversation with their patients. The “consultation” today
consists of peering at the medical records of the patient on the computer and unilateral
prescription of medicines or tests. There is no effort made to find out what
the patient’s fears are, what he wants. Doctors now talk AT their patients( if they talk at all) rather than TO them. There has been no better exposition of this
dilemma and changed paradigm than in the books of two Indian-American doctors: “
Being Mortal” by Atul Gawande and "When Breath Turns to Air” by Paul
Kalanithi, both being presented with this quandry in their personal lives (
Kalanithi succumbed to an incurable neurological condition before he could
complete his book). Both realise that aggressive medical interventions at the
end of life stage, and the lack of any meaningful dialogue, does grave
injustice to patients by lowering the quality of their final days, traumatises
and pauperises families, that such terminal patients should be allowed to exit life with dignity,
surrounded by family and friends, spiritually at peace. Gawande has formulated
the “ Serious Illness Conversation Guide”- a compendium of questions/ issues
that he feels all doctors should use to have a conversation with end of life
patients, to ascertain what they want. This is now being adopted as standard
protocol in many hospitals abroad, including Britain’s NHS. The medical
fraternity, they plead, should accept that mortality and death are a fact of
life, of living itself, that doctors should learn to stop fighting at some
stage , to be humble “ambassadors of death” and not just its enemy. As Gawande
writes: “ Death is not a failure. It is normal.” The real failure lies in our
responses to it- and this has to change.
The second hurdle to
a more humane approach to end of life care are the policies adopted by
governments and insurers. All of them fund, and reimburse, only treatment
procedures in hospitals and nursing homes, and not prevention or palliative
care at home. They do not pay for conversations that do not result in medical
procedures. But even this rigid attitude is beginning to change. In 2014 the
World Health Organisation has recommended that palliative care at homes or
hospices be included in health care systems. Medicare in the USA has now
started paying for doctors’ conversations with terminally ill patients,
treating them as legitimate consultations. Both governments and insurers are
also beginning to realise that paying for palliative care or minimal treatment
at home may be cheaper than
hospitalisation, and that this is perhaps what their patients want.
There is a third
dimension to this issue. One reason why the demand to make euthanasia- whether passive or assisted-
legitimate is picking up globally is the sheer prospect of almost mandatory
hospitalisation, with all its attendant pain, trauma, expense and depression.
The end of life patient really has no choice today. Incorporating palliative
care as a part of health care systems and medical protocol will not cure him,
but it will certainly enable him to spend his final weeks and days in the
comfort of his home, his family around him, without aggressive medical
interventions that cause more pain than good, and without having to opt for euthanasia. Standardising palliative care and
mainstreaming it as legitimate “medical treatment” would offer a third option
to the terminally ill and obviate to some extent the desperate need to opt for
euthanasia. Society and families could then be spared a difficult moral choice and there
would then perhaps be no need for “death clinics” like the one in Belgium where
patients come for the sole purpose of being able to legally kill themselves.
The medical
establishment in India- both governmental and private- need to initiate a
dialogue on the subject so that we could adopt a more humane approach to the
inevitability of death. The Insurance Regulator should mandate palliative, end
of life care as a permissible item for reimbursement under Health insurance
policies. In terminal cases the medical fraternity should not regard death as a challenge but as a release, and should prepare their patient for it. That final battle should not be fought at the cost of the patient. Medicine and mortality should not be implacable foes.
A heavy subject, this week, Avay!
ReplyDeleteThough tackled with your usual grace, thoroughness, and practicality.
This is a huge issue. There can never be enough said. It is difficult to die with dignity, no matter whether one is at home or in hospital or a hospice. Breakdown of physical and mental controls are difficult even to have to watch, more or less helplessly.
ReplyDeleteWhile Medical science and experience-generated intelligence has brought us to this pass, the primary intention has always rather been, I think, to prevent disease/ illness by improving living conditions and resolving 'unnecessary' risk and the threat to life. Longevity being the corllalry.
I also think medical science has always been very aware that postponing the inevitable is a double edged sword. Hence the conflict between the Hippocratic Oath and 'mercy'.
Judging from recent personal experience of loss between 2017 and now, there is an increasing opinion among those loved ones watching helplessly, to request the doctors, when 'terminality' has been accepted, to stop the endless tests and commensurate medication and try and make the patient as pain free and comfortable as possible. Which includes no ventilators.
And 'comfort'/ 'pain-management', together with quietness and the promise that those being left behind would be looked after/ cared for, brings about a calmness. Like apprehension being cleared. A sort of reassurance that it's all right to go and brings about a less traumatic, slightly more peaceful leaving.
So perhaps departures are not entirely to be left to medical science but rather to the spiritual heart. In itself a difficult trust to cling to. Though far better for the ease of passage. But of course such luxury is not always given to us.
Whether it is "easing the passage" or euthanasia, the terminally ill patient and/or immediate relatives should have a choice to let go with dignity and as painlessly as possible. Appropriate legislation and awareness urgently needed. Persons also need to be much better informed by the doctors and medical portals to make informed choices about alternative treatments and likelihood of their working and for how long as in cases of various cancers for instance?
ReplyDeleteWell said and on the nail. Will anyone in India who can make this happen listen?
ReplyDeleteagree with you on this but unfortunately u have missed the patients and caregivers attitude towards death; i see many patients who cannot accept they have reached a point of no return. Often terminal patients go from allopathy to other pathies refusing to accept palliative care alone. To accept palliative care ( which is now a growing specialty) the caretakers also need to accept it as well. the other institution needing a more humane approach is the judiciary who a few years ago would not even accept brain death as death unless organ donation was being considered! !
ReplyDeleteI totally agree with you on this issue. Last year I lost my older sister, based in the USA, to cancer. She had been on chemotherapy for one year, and it was extremely difficult and painful for her. The sessions were three weeks apart and it took one week for her to recover from the nausea and other problems that followed chemo. She tried to recover in the next two weeks, and then the next session fell due. Poor thing.
ReplyDeleteThe last two months I think her oncologist gave up on her. He prescribed opioids for her to keep her mind off her pain and discomfort and to allow her a sound sleep. The quantity and strength of these opioids kept increasing and they were even talking of injections as the pain became more severe, but she passed away before that course could be adopted. At the end my sister opted for hospice care at home and they provided her with a hospital bed at home with a health worker dropping in very morning to attend to her needs and freshen her up.
You talk about pain management and comfort. I think that was exactly what they were doing the last week of her life.... keeping her in an opium induced daze day and night. After she passed away in her sleep, I took up the issue with her physician, also her friend - a lady of Indian origin. Dr. Maya rued the fact that in India use of opioids is banned and the terminally ill patients are put to needless/avoidable pain and discomfort, while in the USA their last days are eased ... not just the patients, but the care givers as well. Wasn’t this assisted death I wondered. Well, it may be so. But isn’t is better than a lingering pain filled end? A debatable question of ethics, perhaps .... but I feel that the patients wishes should also be considered .... I have told my family that I do NOT want to be put on a ventilator and to authorise the doctors to pull the plug if I go into a coma! I hope they follow my wishes!
Pankaj
Spirituality claims that the process of creation-life and death is not just physical but has a core of supreme wisdom. That death does not mean end for ever but only end of a section in the journey of soul. It is generally seen that those who surrender to this faith die peacefully. The claim may not be empirically verifiable but the very trust is palliative on death bed. I feel spirituality has to play an important role to bolster fortitude at the time of terminal departures from world.
ReplyDeleteLovely and very pertinent article. One aspect not covered though, is the actions of the family members. Very often, the motivation that drives the family to admit an elderly or aliling relative to hospital is (a) inability or unwillingness to handle extreme sickness at home, and (b) fear of 'what people will say'. Often, in such cases, the ill person has no say in the matter.
ReplyDelete