My paediatrics colleague email me this article on 'Letting Go' in terminally ill patients, mostly about cancer patients who have recurrence or in situation of treatment failure. We doctors do 'face' death all the time in whatever sub-specialities we are in. Probably some sub-specialities more than others for example oncology and geriatrics. In my own speciality, our problem is compounded further by the probability of my seemingly healthy looking patients walking into our clinic or being wheeled in for a procedure, dying a sudden cardiac death, in the immediate future or post procedurely or worst still for everyone, while 'on the table'.
Most of us are uncomfortable in discussing our very own mortality and in my over 30 years of practising medicine I find this fear to discuss death is usually two way, both the care givers as well as the patients. Younger generations of doctors, probably by training, lack of experience and more so due to their own feeling of inadequacy on the subject, generally have more difficulty in being blunt and 'letting go' of their patients, when in all probability all effort seem to be futile.Majority of them because of their inadequacy in broaching the rather difficult subject matter, significantly more so as well due to the inherrent fear of dampening the 'hopes' and aspiration of incurable,debilitating patients who may nonetheless may be hoping against hope for a 'miracle cure'.
In such situations when doctors do not and cannot find the wisdom to 'let go', unnecessary expense is incurred and in a moribund patient needing intensive care this can be substantial. Unnecessary ops may be recommended in a patient already riddled with cancerous metastases for example not because the surgeon is a charlatan but more often than not because he cannot think straight and also cannot comprehend his own frailty and mortality. A lot of spiritual and emotional energy wasted. On the other side of the same coin, it requires a lot of wisdom, experience and timing to be able to say, NO, we should not go on any more. This is the end of the road!
[ Medicine and surgery is easy when it is just science..The practice is difficult because after science, the art is a lifelong preoccupation for all of us.By right the conciouscios ones in the proffesion never stop learning from their patients ]
Many Malaysians particularly Muslim Malays especially [ due to ignorance,or specific blind spot, of Islam ] believe in oversimplistic 'magical cure'..Faith healing for example....That 'wali' who can change and transplant failing 'hearts' or cut away bludgeoning cancer out of someone's abdomen is perhaps just a phone call away...Somewhere in suburban Shah Alam, some years ago, in Selayang. Success was judged by the number of Jaguars and mercs lining the street leading to the socalled 'faith clinic'. Does not matter whether the socalled 'wali' is a cash crazy charlattan with no ethics, or morality...there is always a 'wali' somewhere that can do 'magic': a common fallacy even amongst even very highly educated, well-heeled Malays.
With the non-Muslim-non-Malays the problem we care givers usually encounter is different. The "Try every thing possible Doc! Expense is no problem " directive has to be tampered with justice and common sense by the doctors in charge. We have a brain dead young Chinese man who had cardiac arrest while scuba diving off Tioman some months ago in our hospital who was kept 'technically' alive in our CCU for more than a month because the primary doctor involved was afraid to put his feet down and tell bluntly that it is all futile to carry on. On the other side we have an unreasonable x numbers of family members who were in varying states of denial and competing with one another to show who cares most. A 'socio-pathological' family situation not uncommon.Personally my sentiment in such situation is that I blame the doctor in charge for 'poor leadership' and not taking real charge and not having the right 'gut' to call a spade a spade.
Death remain very much a taboo subject here. When faced with an elderly patient on 'death row', more often than not, younger close relatives and children would insist on the doctors to 'tip toe' ever so softly and not tell. We , care givers usually will be in a dicey situation: we will be damned if we do, and damn if we don't
I have a tendency to be upfront in discussing death and the possibility of death, and often times, to my dismay, discovered from nuances and body language, of their close relatives, that such discussions were not warranted. Relatives and children and oftentimes wives tend to under estimate the intelligence of their loved ones and their need to know 1st hand, however old and infirmed they are. I take the view that the dying patient, whatever the age, background and intelligence, must be given the personal space and time to deal with his or her imminent 'mortality'.When you have at the most months or week or just days of life on this planet, frank talk is more important than niceties in 'couched language'.
In my estimation, especially if they are Christians, Muslims, Buddhists, Hindus or belong to some form of religion,I respect their personal right and their need of that time and space, to atone or 'taubat' and come to term with their 'God'.Even agnostics need the time frame to organise and leave important wills and sort out their worldly belongings to their loved ones. Initial deep depression is inevitable but in the 'short run' it is much better this way than keeping patients guessing all the way through.
More often than not it is usually the patient who end up telling us doctors not to reveal their grave prognosis to their loved ones. ....and this in easier for us to handle....patient-doctor confidentiality
Thus I find this following article on 'letting go' in a way a vindication of my rather ' honestly blunt' approach which has been my philosophy for decades.
[ my own brother told me once, he was too frighten to see me, because I 'tell' and discuss too much....he is just interested in the 'good news'. I have since then toned down a wee bit.]
Dr Nik Howk
PS:" Life is just three bated breaths... the one that has just gone, the present one which is not entirely expired yet,...and the next one that is not yet certain"
An old Sufi reminder.
[ if our political bosses can internalise this, our FDI, our continuous bleeding in the nation's coffers and our present state of the nation would probably be in a more 'healthy' position that what it is now! ]
From Medscape Medical News
Difficulties in "Letting Go" When Medicine Can Do Little More
There is a fine balancing act in these discussions between not killing hope and confronting other possibilities, including death. However, "talking about dying is enormously fraught," writes Atul Gawande, MD, a general and endocrine surgeon at Brigham and Women's Hospital in Boston, Massachusetts. He is also an associate professor of surgery at Harvard Medical School, and has been a staff writer at the magazine since 1998.
Many doctors admit to finding end-of-life discussions difficult, and often delay them, as previously reported byMedscape Medical News. It is an issue that many oncologists have to grapple with on a regular basis in their clinical practice, and it is regularly discussed in scientific journals and meetings. But in writing on the topic at length in the New Yorker, a magazine known for arts and cultural essays and humorous cartoons, Dr. Gawande brings the issue to a public forum.
In the article, he asks: "What should medicine do when it can't save your life?"
He illustrates the piece with several case histories. One patient was a young woman diagnosed with advanced lung cancer late in her first pregnancy. Although terminally ill, she was always optimistic that another treatment would help, and Dr. Gawande describes how he was "swept along by her optimism" and was unable to confront her with her likely grim prognosis.
"Doctors are especially hesitant to trample on a patient's expectation. You worry far more about being overly pessimistic than you do about being overly optimistic," he writes.
At the back of his mind was the "long tail of possibility" that this patient might be the one who defies the odds.
There is nothing wrong with such hope, he says, unless "it means we have failed to prepare for the outcome that is vastly more probable." In the case of the patient he was describing, this hope unfortunately left her and her family unprepared to deal with her death.
"We've created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets — and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win," he writes.
Issue Is Pressing and Expensive
"The issue has become pressing, in recent years, for reasons of expense," he points out. The terminally ill account for a lot of the soaring cost of healthcare — 25% of all Medicare spending goes toward the 5% of patients in their final year of life, and "most of that money goes for care in the last couple of months, which is of little apparent benefit."
Spending on cancer tends to follow a pattern, he notes. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off.
For a breast cancer survivor, the average medical spend in 2003 was $54,000, most of it on the initial diagnosis, surgery, and where necessary radiation and chemotherapy.
However, for a patient with a fatal version of the disease, the cost curve is U-shaped, rising again toward the end, he points out. For a breast cancer patient with incurable disease, the average medical spend in the last 6 months of life was $63,000 in 2003.
"Our medical system is excellent at trying to stave off death with $8000-per-month chemotherapy, $3000-a-day intensive care, and $5000-an-hour surgery. Bt ultimately death comes, and no-one is very good at knowing when to stop."
When to Stop?
This question of when to stop is a modern problem, Dr. Gawande points out.
"For all but our most recent history, dying was typically a brief process. . . . The interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks."
"These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition — advanced cancer, progressive organ failure. . . . In all such cases, death is certain, but the timing isn't. So everyone struggles with this uncertainty — the how, and when, to accept that the battle is lost."
In the article, Dr. Gawande praises hospice care, and gives several examples of patients who greatly benefited from such care, including a young man with advanced pancreatic cancer. But he admits that all this was a revelation to him; his new understanding was gained first-hand after having accompanied a hospice nurse on her rounds.
Previously, he had equated hospice with "giving up" and a morphine drip, and he is certain that this view is shared by many doctors and patients.
In a live phone-in question-and-answer session with readers, a hospice worker commented on how patients and their caregivers often say "we wish we'd known about you sooner," and asks: "Shouldn't this be a wake-up for physicians? For the benefit of their patients and their patient's families?"
The hospice worker also noted that there appears to be a reluctance among physicians to discuss hospice with their patients, but at the same time there is an enthusiasm for "palliative care." The 2 are actually very similar, she pointed out: "What can we do to make physicians understand that hospice is just an extension of palliative care?"
Another person phoning in highlighted cultural differences, and described several scenarios in the Netherlands in which patients' wishes to stop treatment and die were respected. Dr. Gawande acknowledged the point, and wondered if there is more of a problem in the United States than elsewhere. He mentioned statistics from Sweden, where there has been a shift from around 90% to 30% in cancer patients dying in hospital over the past 2 decades, although he noted that some American centers have seen similar shifts in end-of life care.
"Fear of death (and facing death) seems to be a uniquely 20th century American problem," suggested one reader in an online commentary. "Why shouldn't there be continuous end-of-life discussions, held more casually during life's progression and not under the gun (if you will) at the end of one's life."
That reader criticized doctors for not being straightforward in discussing death, and called for more honesty. This was also a theme that emerged from a panel discussion at the National Comprehensive Cancer Network earlier this year, when experts urged "straight talk with compassion."
However, Dr. Gawande questioned whether these issues "are THAT culture-specific. I think it is common everywhere to come across people who hope against hope that they can be saved," and suggested that this is "just human nature."
"It seems to me that our job in medicine is to just deal with it. If we have to wait for people to stop yearning for the long tail — for the lottery ticket — in order to help them, we will be hurting a lot of people for a long time to come," Dr. Gawande said. "Instead, we need to become more effective in using the techniques that experts already have for walking people through these moments in their lives."
One way to improve is through training. "Experience alone does not produce improvement. You can communicate badly for 30 years," he pointed out.
"But deliberate practice with coaching makes for measurable improvements," he said. "And that's likely what we need in medicine. We train and retrain for surgical skills. We probably need to do so for these discussions with terminally ill patients, as well," he concluded.