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When Less Is More

What’s The Prescription For Better Medicine?

A FEW MONTHS AGO I woke up on a weekday morning with a most intense, unbearable pain in my head and neck.

By the time it had gone, I had come to understand that the word “migraine” means something much, much more than a bad headache; to grasp something of what the crisis in mental health services in Australia has meant for its inner city hospitals; and to see that while hospitals are full of brilliant medical staff, injecting common sense into patient care can nevertheless be a struggle.

After being admitted to the hospital, I was left in a chair in a brightly lit hallway, where I was discovered by a six-foot, barefoot, dreadlocked, transgendered woman, who wanted me to waltz with her.

<p>AAP/Hugh Macknight/PA Wire</p>

AAP/Hugh Macknight/PA Wire

Once rescued by a very small, determined nurse, I was put into a bed beside a man in a wheelchair, who kept getting out of the wheelchair, Little Britain style, whenever the nursing staff disappeared. He also spent a lot of time in the bathroom. Desperate for a quiet, darkened room, I was instead lying in an open ward forced to listen to an exasperated doctor repeatedly ask the man why he has been brought to the hospital. What was he doing here? He finally replied, “Oh, love, I’m raging bipolar, I am.”

I tell you these things to emphasise that when you are sick the very last place you can recuperate is a busy inner-city hospital ward. You simply must get yourself home if you are in any state to do so.

But figuring out what state you are in, seems difficult for the doctors.

I came in with a migraine. I had a brain scan; it was clear. I was given intravenous migraine medication that made me feel much, much better. Thus I concluded I was probably suffering from a migraine. I wanted to go home, a desire that only intensified when I realised that Little Britain had spent all that time in the bathroom smearing faeces all over the tiled walls.

Not so fast, said the doctor! There was an extremely slight chance I was having a stroke and should therefore seriously consider having a lumbar puncture — a spinal tap, a big needle in my backbone — to see if my brain was bleeding into my spinal fluid. (To be fair, both my parents had suffered strokes by the age of 30, so I probably had him spooked.) “Do strokes usually respond to migraine medication?” I asked, speaking very deliberately through the peripheral pain of the migraine. “No, they don’t,” he replied. Right. I’m off.

Afterward, I tell this story to two doctors.

One recent medical graduate insists it was entirely reasonable, offering a mother-of-two like me, with my medical history, a lumbar puncture. He thinks me reckless for refusing.

The other doctor is Dr Ranjana Srivastava, a consultant oncologist who sees general hospital patients as well as those needing cancer care. When I tell her about my hospital experience, she understands why I left that day, happy to take the 1 per cent chance that I was having a stroke.

Srivastava’s recently published essay, Dying for a Chat — The Communication Breakdown Between Doctors and Patients, looks at why patients end up having unnecessary, expensive tests. She also questions why the old and dying are often subject to relentless, painful treatments in their final days.

The author is a kind woman, frank and intelligent. She has written widely on the challenges of doctor-patient communication, including a book, Tell Me The Truth — Conversations With My Patients About Life and Death.

When she tells me that just days ago before our interview, she’d diagnosed a relatively young man with terminal cancer, she does so quietly and directly. She has seen a lot of death growing up in India; more than most Australians will ever see. And now as an oncologist she strives not to avoid the subject in the Melbourne hospital where she works. You can almost imagine how she would appear across a desk, looking you in the eye and gently telling you the worst news.

Yet her essay, published by Penguin, starts with a mea culpa about one of her own patients, who should have been allowed to die in peace.

<p>Ella Rubeli/The Global Mail</p>

Ella Rubeli/The Global Mail

An elderly, frail woman — Mrs Johnson — was brought to hospital with a mild infection. Srivastava was overseeing her care. As the woman’s condition deteriorated she became the unfortunate subject of intensive, invasive and inevitably futile medical heroics by an array of specialists.

“I kick myself for not having been more diligent, by safeguarding her against the assault of so many opinions and interventions,” Srivastava writes. “But it’s hard to do. It’s very difficult to hint to another physician that at 90, a patient needs less not more.”

Srivastava recounts an earlier event in Mrs Johnson’s stay at the hospital. A group of doctors, including the author, all crowded around Mrs Johnson’s bed. While they all observed the patient’s growing distress, they were too busy talking about oxygen levels and intravenous antibiotics to allow the old woman to speak.

“She turns to me and catches my eye. A single tear escapes to her cheek. Reluctant to start the day with regrets I sit down in the chair next to her,’’ Srivastava writes.

“Is something bothering you, Mrs Johnson?’’

“‘Please can someone remove my bedpan from under me? Its overflowing and I’m cold. I just want to be comfortable.’”

Mrs Johnson had watched her husband spend three “awful” months in hospital before he died, and she had told her own adult children, “If I become like that, just let me go’’. But she had never given any more precise instructions about how she wanted to be treated at the end of her life.

Srivastava writes there was one final opportunity to really talk to Mrs Johnson about her wishes. But somehow that conversation went awry too.

“Her latest numbers do look bad,” she writes, recalling the sudden deterioration in her patient’s condition. “Her kidneys are protesting and something will need to be done urgently.”

She imagines what she could have said to the patient:

“Mrs Johnson, there has been a serious change in your health.”

“Mrs Johnson, we need to talk about a difficult subject.”

“Mrs Johnson, we will need your help with this.”

“These are the things she needs to hear,” Srivastava continues. “Instead I hear myself saying, ‘Mrs Johnson, we will need to work on your kidneys a bit.’”

“I hate [my] deliberate vagueness … Tomorrow I will pull up a chair, sit down and ask her how she really is. Tomorrow, I promise myself, things will be different — this is not the way I want to practise medicine.”

But a midnight phone call to Srivastava’s home brings news of Mrs Johnson’s heart attack. A crisis. Too late for conversation. Asked what they want to do, her family reply that — of course — they want everything done to save her.

After the weeks in hospital and despite the scepticism of the doctors about any chance of survival, Mrs Johnson spends a final 11 harrowing days in intensive care — with artificial feeding, one device to stand in for her breathing, another to do the job of her kidneys — before her inevitable death.

“Long after she has died, Mrs Johnson’s case keeps turning in my mind, the taste of dissatisfaction and an unfulfilled contract of care rancid in my mouth,” Srivastava writes. “Was it my fault?

“If the patient is dead, the family is dissatisfied, the doctors are disillusioned … who is it that modern medicine claims to serve?”

In this audio interview Srivastava argues that with an aging population — on some projections, by 2050 life expectancy for Australians will be 93-plus years for men and 96-plus for women — doctors and patients need to find a better way to talk about their medical choices throughout their lives and as they die.

We began by discussing Dr Srivastava’s experience with Mrs Johnson.

16 comments on this story
by Peter Sommerville

Ellen,
This is a gentle yet very thoughtful and thought provoking article. Hospitals can absorb patients in their systems so easily that the patient becomes an object of interest rather than subject of interest. I appreciate what you have put together here very much.

February 12, 2013 @ 12:56pm
by Patrickg

Good piece, Ellen. Atul Gawande writes about this in the New Yorker quite frequently, also.

February 12, 2013 @ 3:30pm
by Roxee

What needs to happen is that the population be educated about advanced health care directives and be encouraged to complete one. When they become patients they need information about their condition, it's prognosis and what the options are, including the option of doing nothing. What doesn't need to happen, which often is currently the case, is for these decisions to be made without the involvement of patients. When patients decide they don't want any heroic measures taken to resuscitate them, to let nature take its course, they need information about the medication they are on, as many are on medication that prolongs that natural process which they may no longer want. When they make such decisions they also need to be given the option of euthanasia, which means religious instituions providing hospital services need to be prevented from having the ability to refuse to implement decisions made by patients that are otherwise legal - if we pass euthanasia laws, which we should.
For too long the decision making about death and dying has often been out of the hands of people. People are too often at the whim of the personality and beliefs of the doctor caring for them. This should stop.

February 12, 2013 @ 3:45pm
by Canterbury Dan

This quite a similar experience to my health journey 10 years ago in a large Melbourne hospital, I concluded that whilst every individual medical professional was caring & well trained they were trained only down the path of "fix this narrow problem" when often a quiet conversation with my self & my wife would have provided a simple logical alternative.i found it entirely necessary to speak openly with my friends & family & have them speak to the physicians as my voice was the last heard

February 13, 2013 @ 8:30am
by John Fraser

The bedside manner of Doctors appears to be something that is either no longer considered important or is subjugated by the medical procedures being over prescribed.

Sometimes a little less haste saves more stitches in time.

February 13, 2013 @ 9:26am
by Cosmic Tourist

Doctors get sued. Further, they (or more often,meddical administration) receive complaints which can have a harrowing effect on people for whom the tiniest mistake can be unforgivable not only by themselves but by everyone around them. Its the medical face of modern Legalism Im afraid, perhaps Bueracratism? In their jobs, doctors are defined by their role, Max Weber style. A kidney doctor fixes kidneys, a cardiologist hearts. They are trained to solve problems within their specialty. And thats what we want them to do. Society as a whole organises itself and thinks in this way. Salespeople sell things, mechanics fix cars and it is very rare to find them acting outside their role. When doctors either act outside their expectation, or perform badly (in the "consumers" opinion of course) then they are subject to sanctions. Is it any wonder they behave in this way? It is not medicine or the health professions at fault but society as a whole. We are so formalised in our view of ourselves and the other that we no longer know what it mean to be human

February 13, 2013 @ 8:05pm
by Ruth Lipscombe

Thank you Ellen Fanning.I hope this article has wide readership.
Our hospital in Innisfail is almost the opposite to what you describe,the care andconcern by staff is faultless but sadly I think they are constrained to provide senseless treatment to oldies because many have not fillied in
Health Care Directives.
I am one of these oldies who is very appreciative of the great treatment I get at our hospital but when I reach the untreatable stage I hope they take note of my H C D early on

February 14, 2013 @ 9:25am
by SM

Great piece, but I would love for the first part to be expanded - the mental health care crisis in Australian hospitals and the effect on care for all patients. It would be great to learn more about the numbers of mental health patients, what should be the best procedure and care for them, and what is the current solution being given. It would be great to hear about carers for MH patients and seeking care for their affected loved ones. It would be good to hear about the health care professionals attending to MH patients in places like emergency rooms. Do they have training for these types of patients? Do they feel equipped to give them proper care? And finally, the other patients seeking treatment alongside MH patients in emergency rooms. The safety, the stress, the privacy - all of it. What is the actual situation out there?

My own personal experiences of emergency rooms have been pretty grim and unnecessarily uncomfortable. I.e. being chatted up by an unstable man while waiting for my partner to be treated, or watching my mother writhe in pain because an ambulance took her to the nearest public hospital in a rough part of town, and a nurse only gave her a saline drip believing my mother to be faking for pain killers (which you could not blame the nurse for, looking at all the other types of patients in the emergency ward). Is this a consistent experience for many Australians taken for treatment in urban public hospitals (because it doesn't matter if you have private healthcare, you may still end up in a public hospital emergency ward)?

February 14, 2013 @ 2:04pm
by Michael D. Breen

Yes a great piece of writing to open up these matters. However much of the problem seems to be systemic. With the decline in belief in eternal life, doctors role as life preserver is more in focus. We as patients need more education, but so do doctors. From what I have seen of medical training the neglect of the person who is becoming a medical doctor means that they will enact the neglect of the whole person in their patient relationships. The western medical model is not holistic it is reductionist. The reductionism apparent as in "the liver in ward 5". Doctors need to be able to deal with their feelings, egos, expectations etc it is only fair to them and us. Top marks as a criterion for selection is such an outdated way of selecting doctors. When the whole person of the medical student is not developed they rely on their power. We give them the power because we need something from them.
When we are sick we need good advocacy, but who is in charge? Who manages the conflict between the egos of the specialists hovering to maintain their self image and protect themselves from the tongues of their peers or the counter attacks from their professional legal brothers? Who keeps proper figures on iatrogenic disease? Having had five episodes of serious iatrogenic episodes I have some idea of the systemic problems.

February 14, 2013 @ 10:35pm
by Else Bock

Filling in your Health Care Directive is a good idea. I've done it. But what happens when you are taken suddenly to a hospital? Who has the HCD? Won't your wishes be overridden by the attending medical staff and even possibly your family in most cases? If you are elderly wouldn't it be a good idea to be able to lodge your HCD electronically with your local hospital? Wouldn't it be possible for your HCD to be accessed by other hospitals? Would it not be possible to wear a bracelet with a reference number to your HCD? I don't want to be kept alive just to prove that mediclal staff can keep me alive and I've said so - but I wonder who will read my HCD

February 16, 2013 @ 8:36am
by Lesley

I have an "enduring" power of attorney that would appoint a guardian to act on my behalf if I were incapacitate. One of their functions would be "to decide what health care I receive". With the assistance of my lawyer, I have added these words: "It is my strong wish that if my quality of life has become grossly restricted owing to an irreversible injury or illness that any medical interventions are based on an attempt to relieve my suffering rather than to prolong my life".
Others may like to consider this wording.
I have also added: "If any organs are suitable for donation they should be made available for that purpose".
This gives it a bit of legal heft if other people in the family try to argue otherwise...

February 16, 2013 @ 1:05pm
by Linda Black

My 85 year old mother had a stroke and the care she received in a major Melbourne public hospital was wonderful. Their only consideration was her comfort, having identified the magnitude of the damage to her brain. Perhaps this situation was more cut and dried but they made the whole experience of her dying one of dignity and kindness. I will forever be grateful for that.

February 23, 2013 @ 8:45am
by jeff

If I ever get a tattoo I think Lessley's well thought out word are the first candidate.

February 25, 2013 @ 1:13am
Show previous 13 comments
by Sylvia Thompson

'Better Doctors, Better Patients, Better Decisions' Envisioning Health Care 2020, (Strungmann Forum Reports) 2011. ed Gerd Gigerenzer & J.A. Muir Gray. Recommend reading this as it covers the issues, concerns raised above. The lack of knowledge; risk aversion; health literacy & illiteracy etc..
I agree the system is at fault and we need to persist in asking why are hospitals/ ambulance staff and the police expected to deal with major social issues? Alcohol & drug addiction; mental/ emotional illhealth; violence, loneliness, homelessness, suicide, child abuse etc..
The notion of 'normalisation' all those years ago emptied one set of institutions of 'distressed' citizens onto other 'institutions' - streets; prisons; hospitals etc.. Add to that group the role of well advertised alcohol and the lack of personal self control (do your own thing; me, me, me culture) and the 'zip your mouth' correctness has created a dumbed down acceptance of societal degeneration where a minority are costing the most dollars and commanding the most services.
Specialists, professionals, all workers are focussed on their task; doing the job they are paid to do and expected to stay within their job roles. The system itself is institutionalised, an outdated culture. Intelligent change is crucial and needs to be removed from political discourse that competes & distracts from the real issues.

February 25, 2013 @ 10:06am
by Therese

A 91 year old gent is being prepared for a hip replacement in Canberra.....what the hell for? A marathon, make the man comfortable but don't waste taxpayers money on something so unnecessary...

March 1, 2013 @ 3:51pm
by Mary Krone

Therese, not so quick. I thought the same when my 88 year old grandmother was offered a hip replacement , how ridiculous to inflict such a difficult operation on an elderly patient. She had it and was transformed from being in miserable and constant pain to being pain free and quite nimble. Her quality of life greatly improved and she lived for many more years.

April 27, 2013 @ 8:03am
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