‘I wouldn’t want it but…’ – commentary on an important paper

 

do unto others title

This study, published by the open access journal PLOS1 last week, approaches but does not solve two important questions: Why do doctors provide intensive treatment at the end of life when they would never accept it themselves? And how can they propose such treatments when evidence suggests that patients do not want it?

The paper begins by presenting general data on public opinion about preferences at the end of life, such as,

‘More than 80% of patients say that they wish to avoid hospitalizations and high intensity care at the end-of-life, but their wishes are often overridden. Most patients at the end-of-life prefer care that is focused on augmenting their comfort and dignity…’

and,

‘Studies show that the end-of-life care patients receive depends not on the patients’ care preferences or their advance directives (AD) but rather on the local health care system variables like institutional capacity and individual doctors’ practice style’

So the authors asked over a thousand young doctors about their attitudes to advanced directives (ADs), which in the US are an established method of allowing patients to determine, broadly, what sort of treatment they receive in the context of critical or incurable illness. The questions cast ADs in both a positive and a negative light, and examples included:

dountootherssamplesquestions

The 2013 group were also asked to fill out a simulated AD themselves, which look like this:

  1. Choice To Prolong (full-code status): “I want my life to be prolonged as long as possible within the limits of generally accepted medical treatment standards” (or)
  2. Choice Not To Prolong (no-code): “I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death”.

Their answers were compared to a large group of community doctors who had been asked the same 14 questions about ADs in 1989, just as the Patient Self Determination Act was about to be passed. The two groups are quite dissimilar, and although I did not find the comparison between two eras that enlightening, the authors did find significant differences in 3 aspects:

‘Compared to 1989 cohort, the 2013 doctors (a) were unlikely to believe that AD will lead to less aggressive treatments even for patients who do not have an AD (b) had greater confidence in their treatment decisions if guided by an AD and (c) were less worried about legal consequences of limiting treatment when following an AD.’

The contemporary respondents were generally supportive of the idea of ADs, and did not feel that use of ADs posed a threat to the fundamental duty of doctors, the preservation of life, in other contexts. They felt that ADs can enhance autonomy and can legitimise the therapeutic decisions that are taken for patients.

The study also found that doctors’ attitude to ADs varied according to their specialty, the calculated Average Advance Directives Support Score (based on how they responded to the 14 questions) being lower for radiation oncologists, for example.

As to what the doctors would want for themselves…they clearly, and predictably, wouldn’t want prolonged intensive treatment.

‘The majority (n = 954 or 88.3%) of the 2013 doctors opted for the Do-Not-Prolong Life (no-code status) for themselves when terminally ill. Only 11.7% of the doctors opted for the Choice-to-Prolong Life (full-code status) for themselves. Doctors who were less supportive of AD were more likely to opt for full-code for themselves…’

The final line suggests that those who would rather be resuscitated are less supportive of engaging patients in discussions on their preferences.

In the discussion the authors explore possible reasons for the disparity between doctors’ general acceptance that the intensity of treatment should be moderated when the effects of chronic, incurable disease draw patients the into the last year or months of life, and what a actually happens – which is quite different. The reasons are largely based on conjecture, and do not relate to the data presented in the paper (which I can never get away with when I try to publish papers!). They come up with 4 possible explanations –

1) Doctors have been witnesses to the undesirable burdens of treatment: ‘…it is likely that doctors recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high intensity treatments at the end of life and they (the doctors) consequentially wish to forego such treatments for themselves’

2) …but they are unrealistic when it comes to their patients’ chances: ‘…doctors tend to be very optimistic and overestimate the prognosis and life-span of their patients. This results in escalation of high burden technological interventions until it is clear to all stakeholders that the patient is dying. Sadly, this clarity often comes in the last few hours to days of life, resulting either in terminally ill patients experiencing highly medicalized death in hospitals or in very late referrals to hospice care.’

3) The system default to intensive treatment: ‘…the culture of modern biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so. This may foster implicit biases in doctors causing them to override their patients’ autonomy when the patients’ choices are in conflict with what the doctors believe will benefit the patient.’

4) And in the US at least, money is involved: ‘…the current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons and does not reimburse them for conducting prophylactic conversations that elicits values and goals of care and what matters most to patients and their families at the end of life.’

There is much more that could be said here. In the field of acute/general medicine doctors meet patients who would benefit from being engaged in a conversation about end of life care on a daily basis. In the UK this would not necessarily be expected to result in a detailed AD (which in my experience remain rare), but perhaps an agreement on resuscitation status and a general inclination about where they stand on prolonged organ support. Other reasons for failing to broach end of life scenarios might include:

Non-holistic focus: perhaps specialists are seeing patients as diseased bodily systems that need ‘managing’. This is age old accusation, but one that still bears scrutiny. The PLOS1 one paper includes an interesting observation in the introduction;

‘there was a twelve percentage point increase in Medicare beneficiaries who saw more than ten different physicians in the last six months of life, especially medical subspecialists…’

It may well be the narrower one’s area of specialisation, the harder it is to see the whole picture.

First contact: if you are one of those ‘ten different physicians’, it is hard to steer the conversation directly into the realms of pessimism. When seeing patients for the first time, it is natural to want to focus on the positive. It requires some confidence to be open and honest about the utility, or futility, of treatment from the outset.

Precedent: …and why did none of the previous 9 physicians bring up the subject of dying? It is quite common to meet patients who are clearly near the end of life, and who has been under other specialists, but who have never been engaged on the subject of end of life preferences. Sometimes you begin to wonder – well, if they didn’t bring it up, why should I?

A trial of therapy: because the default approach, quite rightly in medicine, is to try to prolong or preserve life, an intellectual compromise that appears to justify intensive treatment is the ‘we’ll try a period of aggressive support, but if it clearly isn’t working it may be time to discuss comfort measures’. In this way patients can easily move into an intensive medical environment, a move which sometimes acquires a momentum of its own. I have written about this is ‘5 days – a tale of escalation creep’

Finally, a question that challenges the paper’s presumption – are we really subjecting patients to treatment against their will? I don’t think so. I don’t know of any patients who have been taken to intensive care, or given chemotherapy, or undergone surgery, against their wishes. It is more likely that we are not facilitating patients in the difficult and subtle process of articulating what they truly want from the medical system into which they have entered; a system that can do just about anything, unless you say no.

 

oOo

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