Issue 17 / 7 May 2012

WHEN life is coming to its end, we tend to think about quality rather than quantity. But how is this played out within our increasingly risk-averse society where “bad outcomes” are to be avoided?

I have an interesting context here. In the emergency department where I work, we see lots of people near the end of life — especially the very elderly.

We are improving our focus on the wider needs of patients, including physical comfort, and have particularly focused on the comfort of the elderly and small children, such as warmth, alleviation of hunger and amusement.

For the elderly, we are starting to use tools such as “comfort blankets” — lap rugs with buttons, ribbons and zips that can occupy the hands of a “plucky” dementia patient.

Nice idea? But what about the inevitable question — could they hurt themselves? Could they swallow the buttons?

Well, in general, the elderly wear clothes that have buttons and zippers. Would we deny them the comfort of their clothes in the name of safety?

How kind are we being in seeking to restrict their remaining time by limiting every potential risk?

Similar thinking applies when we consider whether to admit elderly patients to hospital. Is our aim just to keep them alive as long as possible?

Does being completely cocooned in “safety” mean that they might no longer feel alive? Why are we doing that?

What should we do with an independent 92-year-old who presents to the emergency department with chest pain? Would that person benefit from a series of troponin tests? Admission to coronary care? What might happen if we relieve the pain and let them go home?

If they died, would we fear being held responsible? But what if we coaxed them into staying in hospital and they died there? Would we then be relieved we had not sent them home to die, or would we regret depriving them of their last few days at home?

Many of the people who are now very elderly grew up in times when health risks were much greater than today, and they lived their lives productively in that knowledge. Perhaps they fear death less than we do. Perhaps their appreciation of comfort is greater than their fear of risk.

By denying the elderly the right to take their own risks when it comes to death, we further erode their dignity.

I’m not suggesting that we abandon them to immediate danger of harm — that is not dignifying.

However, at a certain stage of life, loss of dignity might actually be worse than dying.

Should we ever allow risk aversion to trump kindness?

Dr Sue Ieraci is a specialist emergency physician with 25 years’ experience in the public hospital system. Her particular interests include policy development and health system design, and she has held roles in medical regulation and management.

Posted 7 May 2012

12 thoughts on “Sue Ieraci: What’s worse than dying?

  1. Trevor says:

    I think it is unfortunate that doctors are placed into a position to answer the question that Sue asks (with necessity and more should be asking it) when the answer has to have a large contribution come from the community at large.
    There are so many aspects to this and one is that we have removed ourselves from death and dying by not living amongst our extended family. People once (happily?) died at home. Death has become abnormal to us. Everyone should be encouraged to think realistically about living weills; regardless of age.
    There is also the monetary cost. How much does it cost to “eke out” a few extra days of a life in ICU versus the cost of a life saving apendectomy.
    We are going too long in waiting to answer some of these question. In the meantime we see an ever growing health budget which is not giving proportionate gains in health status to the community but that same community wanting to pay less in taxes.

  2. Dr Horst Herb says:

    I think the pathological fear of death that has started paralysing our society originates among those who haven’t lived life to the full, haven’t had the experience that they “have done their bit” in life yet, but are old enough to acknowledge their own mortality. They fear they are missing out on something and hence they want to extend their life no matter at what cost.
    Sadly, this seems to apply mostly to those in society who are in legislative or governing positions, so they impose the consequences of their dissatisfied lives onto the rest of the (mostly productive and satisfied) population.
    We will continue to miss out on opportunities, enjoyment and rich experiences in life through the consequences of tort law, rules and regulations until those who make the rules are replaced by well rounded, experienced and satisfied people.

  3. Dr Klaus Stelter says:

    Good on you Dr Ieraci for bringing this up and maybe what we should do is change the name of our “Advance Care Directive” to a document entitled “Dying with dignity” – I bet a lot of old (and not so old) codgers would “flock” to that concept. Only trouble would be the lawyers, who would endlessly argue what “dignity” means!! But why not ask the patient? – the last I heard they were still supposed to be in control.

  4. Werner says:

    Thank you Sue .. it needed to be said .. we need to have the debate about maintaining the dignity of our elderly patients when so much of what we do is driven by faceless bureaucracy and medico-legal impetus .. sadly when we can make a difference we’ll find we have squandered our resources ..

  5. Anonymous says:

    As an ex-GP, ex psychotherapist, long-retired, age 85 and well enough for my age, in social contact with many aged persons, may I emphasise one issue, that you know if your patient is going to be well understood and cared-for at their own or a close relative’s or friend’s home, or condemned to dying in an institution.

  6. George Burkitt says:

    Great to have this matter discussed. The fundamental problem is the failure to recognise that dying at the end of a long and fruitful life is a normal part of the life cycle. Because until recently very few people lived to a great old age, we have routinely pathologised death and have never examined and described it from a non pathologising viewpoint. I know of no scientific description of the natural history of dying at a great age – the physiology, the psychology and the spirituality. Without this we cannot manage the dying process of the great aged in any scientifically coherent way. It is as absurd as trying to manage child birth without understanding the natural history of childbirth.
    How many of us look forward to spending our last months or years in a high care nursing home place? Not me. I would do almost any thing to avoid this. So for example, if I am very old and frail, I want to have the right to fall over and fracture my hip and then to be given the best palliative care at home so that I can die of “the old man’s friend” a few days later.
    I have a very detailed advance directive but it will probably not be immediately at hand when needed in an “emergency” situation. There is a very high priority for a national computer based register of advance directives which can be consulted in the casualty situation before any life saving measures are undertaken.
    I would love to hear what others think.

  7. Dr Joe says:

    Nobody wants to die in hospital. If asked people would like to be comfortable in their own bed. Whilst this is not always possible our obsession with “saving lives” coupled with a coronial system which believes nobody dies unless an error has been committed, robs people of dignity. And for what? To eek out a few more weeks before the inevitable.
    Let,s accept the inevitability of death and empower people to die with dignity

  8. Diane Campbell says:

    Good on you Sue. And I liked Dr Burkitt’s contribution. Could I add a brilliant but simple idea used by a sensible paediatrician of my acquaintance – he would copy clinical letters to the local hospital if he was caring for a child likely to present; if the child had not been there he’d ask medical records to create a file. If you live in an area where you either have a medical record and/or know which hospital(s) are likely to see you in an emergency you might consider sending your directive to be filed, pending the creation of the electronic database.
    I think the worst offenders are some nursing homes. Surely a detailed advanced directive should now be part of the assessment for high level care? It’s simply not possible for some people to be cared for by relatives, but it’s reasonable to assume that if one is admitted to a high level care facility for end of life care that one will not be sent to the DEM for “assessment of deterioration”. And the DEM should stop CTB on every minor fall on patients who would never get to neurosurgery regardless of the findings!!!!!

  9. JD says:

    The guiding principle should be the patient’s wishes, or if they are unknown what their next of kin believe they would be. In my experience, the elderly fear loss of independence, and pain/discomfort more than death, and it’s uncommon for the NOK to dissent from a more conservative plan (not necessarily palliative) when they accept this would be their elderly relative’s wishes.
    However, Sue’s example of an INDEPENDENT 92 yo with chest pain is a particularly poor one, ageist, and I think a step too far in this discourse. People come to hospital for a reason – whether it be to seek relief, to be kept alive or other less well-informed reasons. The example ignores the myriad of easily correctable complications that can accompany an ACS that cause discomfort or death, and if treated, could restore the patient to their previous level of independence. In addition, the patient may or may not wish to take secondary prevention treatment (it’s up to them, of course). There would be a number of similar examples.
    I have no problem with sending demented, totally dependent patients with no hope of rehabilitation back to the nursing home from the ED provided adequate palliation can be provided. But there are shades of grey between them and the independent elderly, and good clinical judgement needs and common sense (unfortunately not common) to be exercised. I agree the “obligatory” Advance Care Directive for nursing home patients may be a good idea. However, some of the ones I’ve read are overly long and complex in attempting to cover all possible contingencies.
    Trevor, questions the cost of treating patients in ICU: my recent experience is that intensivists have become selective – possibly too selective. I think it was Rob Loblay who made the point that while in retrospect we can say a lot of money is spent on patients who have a short life expectancy, it is still not possible to prospectively say which of those patients out of a large group with a poor prognosis will survive. So, unless we condemn them all to die by not treating them, we are obliged to treat, at least to a certain point.

  10. Sue Ieraci says:

    JD – you say “Sue’s example of an INDEPENDENT 92 yo with chest pain is a particularly poor one, ageist, and I think a step too far in this discourse.” You suggest “The example ignores the myriad of easily correctable complications that can accompany an ACS that cause discomfort or death, and if treated, could restore the patient to their previous level of independence.” I am certainly not advocating withholding pain relief – quite the opposite. However, I would be interested to hear about the range of “easily correctable complications” that apply here, without the risk of doing more harm than good. Could you outline your apporach to patients in this situation?

  11. JD says:

    Sue, I don’t think that it is reasonable to ask what treatments one can give “without the risk of doing more harm than good”. That question presupposes a “hands-off” approach since anything we do to any patient is potentially harmful – even prescribing something as seemingly innocuous as regular paracetamol can be harmful. Management needs to be tailored to the individual, and in the elderly their functional status, cognition, co-morbidities and prospects of rehabilitation are among the things that need to be considered. Small eminently survivable infarcts can cause death and discomfort. So, depending on the patient, I wouldn’t send them home; I’d treat their brady- or tachy- arrhythmias, heart failure, recurrent chest pain, hypotension due hypovolaemia, and try to limit the size of their infarct. Even if they needed palliation, that needs to managed properly – more than just prescribing pain relief. So, yes, I think you being ageist by picking an age for the example. The patient is “independent” and to me this does not paint a picture of a elderly, frail, individual, with multiple debilitating co-morbidities who needs/wants palliation – quite the opposite, and not particularly relevant to the discussion. Had you given us a doubly-incontinent, moderately demented, poorly mobile, nursing home resident with severe urosepsis or pneumonia that would have been a more pertinent example. There are some important questions to be asked there.

  12. Dr John B. Myers says:

    The management of an independent 92y old person who presents to a hospital emergency department with chest pain deserves assessment and treatment [Human Rights].
    Some, quite a few in fact, deny patients, the elderly in particular, their rights by promoting safety first, under the guise of Quality and Safety. Dr Sue Ieraci presents this as “Does being completely cocooned in “safety” mean that they might no longer feel alive? Why are we doing that?” with which I completely agree. However, in asking the question “However, at a certain stage of life, loss of dignity might actually be worse than dying. Should we ever allow risk aversion to trump kindness?” in relation to the 92y old patient, Sue is promoting a new scenario, albeit and perhaps unwittingly, of nihilism and denial – an attitude which is not synonymous with the practise of the art of medicine and its noble aims and achievements but which is one of abuse through denial and neglect, a denial of rights under the quasi ethical guise of expediency, in fact also of no compassion and of incompetence. How so? Both types of abuse arise because each proponent is acting according to their own view, not the patient’s view. The definition of “best interest” is that it is a personal wish or personal viewpoint, not an imposed one, and one that upholds the wellbeing emotional and psychological, of the person.
    Rights are to be protected and upheld. The Hippocratic Oath and Charter of Human Rights is founded on “doing no harm”. This basic human right does not differ according to age, gender, race or religion. Clearly, advocating safety at the expense of respecting the person’s wishes is inflicting harm and may even be described as cruel, as is treating pain in the short-term in a 92y year old without any other sound and / or responsible after management or care that may be required without knowledge of the patient’s wishes and informed consent.
    Charter of Human Rights and Responsibilities Act 2006 – SECT 10
    Protection from torture and cruel, inhuman or degrading treatment
    10. Protection from torture and cruel, inhuman or degrading treatment
    A person must not be-
    (a) subjected to torture; or
    (b) treated or punished in a cruel, inhuman or degrading way; or
    (c) subjected to medical or scientific experimentation or treatment without his or her full, free and informed consent.
    Reasons for decision must be objective and subject to the wishes of the patient.
    An independent 92y old person who presents to an emergency department does so in the hope that he/she will be treated respectfully, that his/her condition will be diagnosed and treated with expertise and that informed consent will be obtained for this and any further procedures. Admission or onward referral depends on the ability to provide adequate services. Length of stay is determined by the advantage of being an inpatient over discharge. Finally discharge home or to supported accommodation or transitional care depends on the level of support required or time required for rehabilitation and recovery.
    In the event that one is required a self appointed advocate i.e. someone in whom one has trust to act in one’s best interest, i.e. according to one’s own wishes, is a better option than an advance(d) directive as all circumstances are not necessarily foreseen.
    People find themselves in jobs that they are not suited for or they meld the job to suit their personal needs. The practice of medicine stems from compassion, which has no base in serving the service provider’s own needs. Being a technician i.e. “a duty to care”, is the service provider’s insurance that he/she will be paid. “Duty of care” however, is the gold standard, which puts self-interest aside by being compassionate and acting beyond the call of duty, as the advocate for what is the patient’s best interest as the aim and goal of medical treatment and life in general, namely “happiness”, albeit getting paid.
    I stood for State Government in Victoria in the 2007 State election to have the Guardianship and Administration ACT 1986 reviewed because “best interest”, as I define it and with which the Law Reform Committee’s view is consonant, was shunted to one side in favour of a third party determination in the legislation.
    Reviews by Government of Advocacy/Power of Attorney and Guardianship while yet upholding that best interest relates to personal and emotional well-being still allow for compromise on patient wishes, which is not in accord with the Charter of Human Rights Section 10 c, as it compromises on doing what the patient wishes by not stating this as a must.
    Every person has the right to life and has the right not to be arbitrarily deprived of life.
    And be in accord with the Hippocratic Oath’s sentinel contribution, “primum non nocare”.

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