Tag Archives: communication

Finding the words

Making and documenting good decisions about CPR (cardiopulmonary resuscitation) and treatment escalation plans, that are truly shared decisions, is a challenge. I find that the challenge comes from a number of factors: intrinsic difficulties of talking about the possibility of death in a largely death-denying culture; the great diversity of beliefs, wishes, and level of preparation for such decisions amongst patients; difficulties in facing my own mortality and the ways in which personal situations may affect my professional abilities; navigating tensions between hope and acceptance; and additional complexities that stem from having such conversations in the context of an emergency hospital admission. In the midst of a busy shift, faced with distressed people who are in pain, sometimes it is hard to find the words.

A number of recent cases have highlighted concerns about the process of resuscitation decision making and documentation. In particular, people have been distressed by the fact that DNACPR (do not attempt cardiopulmonary resuscitation) orders have being placed in their records without an explicit discussion with either them or their family. The High Court Ruling on R (David Tracey) vs 1) Cambridge University Hospitals 2) Secretary of State for Health forced the medical profession to face up to residual paternalism in this area of practice, and to make changes. It prompted some important reflections amongst individuals, teams and institutions and I have seen a noticeable difference in practice since the ruling, which reinforced the legal duty to discuss decisions about care with patients, particularly DNACPR decisions.

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DNACPR discussions provide an opportunity to engage patients in informed decision making. This requires an awareness of what CPR is and what determines success. Unfortunately there is a wide gap between the practice and success rates of CPR on television, and reality [1,2]. Worse still, this gap has widened in recent years [3]. With this backdrop, it is essential that discussions between healthcare professionals and patients and their loved ones are open, honest, realistic, supportive and clear. A number of reports have questioned whether the processes and documents we use currently are adequate to support such discussions. For example The Health Select Committee’s enquiry into end-of-life care reported:

“We recommend that the Government review the use of DNACPR orders in acute care settings, including whether resuscitation decisions should be considered in the context of overall treatment plans. This Committee believes there is a case for standardising the recording mechanisms for the NHS in England.”

This has led to the development of a newly designed Emergency Care and Treatment Plan. The Resuscitation Council (UK) is currently holding a public consultation on this document and the information provided alongside it. Documents and guidelines have an authority and power that should not be underestimated; their language and structures shape our behaviour and frame our interactions. It is essential, therefore, that the panel considering new documentation on decisions regarding treatment during serious illness get it right. But what does ‘right’ look like? I have read the proposed document and it is has clearly been drawn up with good intentions. There are several aspects which would improve clarity and communication. However, the language used at the heart of the document leaves me concerned. I can see the benefits of widening the question beyond a yes/no decision on CPR, to encompass overall priorities for treatment. But, for me as a potential patient, and as a doctor in its’ current form the wording doesn’t capture the essence of these decisions in a way that will positively support clarity of communication.

Following discussions on CPR and other interventions, what I hope to capture in my documentation is the values of the patient, and any lines that they do not wish to cross. The current proposal requires a decision between three options:

ECTP options

Although I could fit in any discussion to these categories I worry that they do not prompt and support relevant choice and accurately capturing the priorities of patients and their families. Most people’s priority is to get better, but this is not always possible or realistic. Who would not want to ‘consider’ all treatment to prolong life if framed in this way? I am concerned that the  alternative options are too broad and therefore do not really help in this area of complex decision making. Although of course the document would be part of wider, more detailed discussions, these key headline categories could be a hindrance rather than a help in this process. I have suggested that the panel consider stronger wording and tentatively suggested:

  • The over-riding priority is to prolong life, and all treatment options, no matter how invasive would therefore be accepted.
  • The priority is to prolong life, but not at the cost of quality of life. Some interventions would not be accepted (see below for specifics).
  • The over-riding priority is quality of life, therefore interventions which may prolong life but at the cost of quality of life would not be accepted. Care should be focused on symptom control, comfort and dignity.

These are in some ways subtle changes, but for me these statements are clearer and give a better sense of priorities, prompting documentation of more specific details. They also bring to the fore the real chance of harm from invasive interventions and ensure this forms part of decision making. I do not imagine everyone will agree, and I don’t think this formulation is perfect. I would be very interested to hear what others feel about the proposal. 

The consultation closes at 9am on 29th February. Please consider submitting a response, particularly if you are a patient or carer. We need many voices and perspectives to make sure we find the right words and get this right.

  1. Harris, D., & Willoughby, H. (2009). Resuscitation on television: Realistic or ridiculous? A quantitative observational analysis of the portrayal of cardiopulmonary resuscitation in television medical drama. Resuscitation,80(11), 1275-1279.
  2. Hinkelbein, Jochen, et al. “An assessment of resuscitation quality in the television drama Emergency Room: Guideline non-compliance and low-quality cardiopulmonary resuscitation lead to a favorable outcome?.”Resuscitation 85.8 (2014): 1106-1110.
  3. Portanova, J., Irvine, K., Yi, J. Y., & Enguidanos, S. (2015). It isn’t like this on TV: Revisiting CPR survival rates depicted on popular TV shows.Resuscitation, 96, 148-150.

Would I lie to you?

Most days at work pass in a blur of clinics, referrals, ward rounds, meetings, emails and phone calls. But work as a doctor is more than tasks. It requires a repeated, brutal confrontation with the realities of pain, suffering and illness; with humanity itself. At the end of the day I am sometimes left with emotions and questions that I can’t leave behind at the doors of the hospital. I have often felt poorly equipped to approach the grey areas of medicine that no textbook or Google search can answer. And so this year I signed up for an introductory course in Philosophy.

Last week our topic was moral philosophy which attempts to answer questions such as “how should I live?”, “what ought I to do?” We began with a discussion on whether it is ever right to lie.

Life imitating art

I was surprised when, early in the discussion, one of the class asserted that doctors lie all the time, particularly about poor prognoses and impending death. They expected doctors to lie to patients if asked if they were dying, and seemed to accept this. This resonated as I recently faced exactly this situation. I was asked by a patient if he was dying, and I answered honestly, ‘yes‘. He died the same day. His family were extremely upset and challenged me over what I had said. They felt I had hastened his death by taking away hope, and that I had no right to divulge this information without their consent.

I have thought a lot about this patient, my response and his family’s feelings. Was I right to answer honestly? Did he really want to know? Is there any truth in the assertion that removing hope hastens death? Is false hope of any value? Is it ever right to lie to a patient?

everybody lies

Would would Kant do? 

Philosophy offers some possible answers. Kant’s deontological theory asserts that it is always wrong to lie as we have a duty to tell the truth. This is true whatever the consequences. Kant believed that people have instrinsic worth or ‘human dignity’ through being uniquely rational agents, capable of freely making their own decisions. Lying does not give people the respect they deserve and robs them of their human dignity as it prevents them from exercising their rationality. Also, since I would not want to live in a world in which lying was commonplace, I should assert the maxim ‘do not lie’ and act in accordance with this.

From a Kantian perspective, therefore, I did the right thing in answering my Kantpatient honestly, even if that may have hastened his death and caused distress to his relatives. Most people find Kant’s absolutism challenging. Life is complex and nuanced and always telling the absolute truth inevitably causes harm which could be avoided. Our class quickly cited many examples of situations in which it seemed morally right to lie and we questioned whether that was because Kant was wrong, or whether we were too weak to live out our convictions.

One problem with a duty-based moral framework is that different duties may be in opposition. If I have a duty to both tell the truth and exhibit compassion, which should be prioritised if I believe they are in conflict? How do I decide which is the ‘higher‘ duty?

Consequences

An alternative approach is consequentialism, born from utilitarianism. Jeremy Bentham and his followers assert that the only question you need to ask when deciding on the best course of action is “what will bring about the greatest happiness and the least pain?”

benthamOne challenge to utilitarianism is that we can never truly know what will happen as a result of our actions. However, we can seek out all available evidence to help us make likely predictions. Every decision we make in life is based on the information available to us at the time, rather than absolutely all information known to man.

After reflecting on my patients’ family’s words I searched for evidence on whether knowledge of terminal illness shortened prognosis. I have heard many anecdotal tales of patients living for a few extra days or weeks in order to witness some important personal event such as a wedding, a birth or a final farewell with a relative flying in from abroad. I had not heard much discussion of patient’s rapidly declining after having frank discussions on prognosis.  A literature search did not reveal anything that helped me answer the question. It was therefore challenging to weigh up this potential harm as a result of my actions.

One consequence of lying that is more predictable is that it leads people to make decisions based on false information. In this case, it could have prevented my patient from saying important last words and seeking resolution, forgiveness or solace from friends and family. It is difficult to put a value on this but many who write about their own terminal illness cite the importance of these conversations at the end and I would not want to rob someone of this opportunity due to a paternalistic vision of ‘protecting them from the truth’.

As Freud said:

“The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

When is a lie not a lie? 

Interestingly, defining lying may not be as simple as it first seems. Sam Harris’ definition highlights that deceit is a necessary condition:

‘To lie is to intentionally mislead others when they expect honest communication’

This made me think. Did my patient expect honest communication? Or was he looking for me to collude with him in false optimism? I place a high value on hope but do not believe in giving false hope and in this case all my education and experience told me that this patient had days left at most. I like to think that I am sensitive to cues and that in this case he truly did want to know. In fact I realised that very few people ask “am I dying?” directly. Forming the words and uttering them aloud must take courage, and I think almost all of those that muster sufficient will to ask do genuinely want an answer. I am careful never to answer subtle, side-stepping queries too directly, and to try to match my language to that the patient chooses to use. It seems I already attempt to assess whether my patients expect honest communication, without having thought about this aspect of our relationship before.

We can never know what a patient’s true intention is when they ask us for truths no-one really wants to hear. But I think starting from an assumption of patient autonomy, and therefore responding with honesty is the morally right thing to do.

Doctor, know thyself

We must also be careful not to fall into the trap of imposing our personal values on those for whom we care. Personally, I would always want to know the truth, however hard it might be to hear. I value autonomy and my ability to act rationally based on all available information above almost any other right or virtue. But this is not so for everyone. In my quest to be honest and avoid paternalism I must be careful not to do harm by giving too much information too fast.

The philosophical physician

My foray into moral philosophy has not provided me with any definite answers to my original questions about whether I was right to tell my patient he was dying, or whether it is ever right to lie to a patient. But it has provided a framework through which I have been able to question and defend my actions – to others and, more importantly, to myself.

As I left the hospital this week I felt just a little more content, thanks to the wisdom of Aristotle, Kant, Bentham and Mill. Philosophy has a lot to offer physicians. I intend to open my mind.

 

Further reading: