Is dying a forgotten occupation?

Abstract: This blog entry reflects on my experience as an occupational therapist treating a terminally ill patient and my lack of understanding of a doctor's and a palliative care team’s perspective.

What happened:
I once treated a deteriorating patient diagnosed with gall bladder cancer. She did not know her diagnosis or prognosis and asked for rehabilitation to go home. Her relentless efforts to mobilise were not rewarded as she became progressively weaker and she asked me several times what was wrong with her. I asked the doctor responsible for her care to see her to answer her questions but he told me that things must have been explained to her, because the palliative care team had seen her, and he therefore deduced that she must have memory problems. A mini-mental state assessment revealed no memory impairments so I read through her medical records and was unable to find any notes to say that anybody had explained her diagnosis and prognosis to her. When I presented this information to the doctor he told me that just because something had not been documented, that did not mean it had not been done. I then contacted the palliative care team. They told me that the patient’s daughter had asked them to withhold information about diagnosis and prognosis to avoid upsetting her mother.

How I felt about it:
I felt very uneasy about this and discussed it with the ward doctor because I believed the patient had been robbed of her autonomy and her failure to reach her unrealistic goals was causing her distress. I wondered whether a younger patient would be treated the same way or this paternalistic approach was due to age discrimination. My personal beliefs impacted on my judgment because I had recently studied the Tibetan Book Of The Dead and considered contemplation of and active preparation for death to be essential for well-being at the time of death. I searched for information about best practice and found the Liverpool Care Pathway[1]. I asked the doctor if that would be appropriate but I felt that my question was dismissed and not answered. I concluded that palliative care was beyond my expertise and that the team’s decision was beyond my understanding. Three days later the patient died.

What I think about it:
My training in ethics so far has taught me that there is no concrete ‘right’ or ‘wrong’ course of action for any given situation from a moral standpoint. The best course of action for the situation above is therefore unlikely to be prescribed in the Tibetan Book Of The Dead or perhaps even in professional guidelines. Doctors however are bound to adhere to the General Medical Council (GMC) guidelines, because they serve to define characteristics of the medical profession. I looked at the GMC guidelines to see why the doctor and palliative care team behaved as they did in this case. Points pertinent to the clinical example described above are therefore described below.

“If carrying out a particular procedure or giving advice about it conflicts with your religious or moral beliefs, and this conflict might affect the treatment or advice you provide, you must explain this to the patient and tell them they have the right to see another doctor.” [2:p10]

Though I am not a doctor, adherence to the above GMC guideline is useful to me. I have not seen any scientific evidence to support beliefs from the Tibetan Book Of The Dead, so it may be wrong of me to allow this influence to colour my judgment when treating patients that do not follow Tibetan Buddhism. As this issue is very important to me, I may not be suited to working in palliative care.

“recognise and work within the limits of your own competence” [2:p8]

As an occupational therapist it would have been unprofessional of me to discuss the patient’s medical diagnosis or prognosis with her before a doctor explained them to her. I had received no special training for breaking bad news or palliative care, so it would have been wrong of me to disregard the palliative care team’s treatment plan based on their superior expertise. I have since learnt that the Liverpool Care Pathway is only for patients whose death is imminent and that was not evident in this case so if I had acted beyond my remit it is likely the patient would have suffered unnecessarily as a result. Bearing this in mind helps me deal with the guilt of having seen a person die while being denied information she was specifically asking for about her own condition.

“If a patient insists that they do not want even this basic information, you must explain the potential consequences to them of not having it…..You should not withhold information necessary for making decisions for any other reason, including when a relative, partner, friend or carer asks you to, unless you believe that giving it would cause the patient serious harm. In this context ‘serious harm’ means more than that the patient might become upset or decide to refuse treatment.” [3:p12]

This guideline seems to contradict the events that actually took place. If a similar situation occurs in future I will ask my seniors to explain how to me how best to interpret paragraphs 15 and 16 of the GMC guidelines on consent[3:p12]. I believe in most cases, being honest with a patient about his or her diagnosis or prognosis would be the best thing to do.

“Keep clear, accurate and legible records, reporting…..the decisions made, the information given to patients…”[2:p8]

The incident described above highlights the importance of good medical recording. If the palliative care team’s and ward doctor’s clinical reasoning had been clearly documented in the patient’s notes I would have spent less time trying to get an accurate history and could have spent more time on therapeutic contact, thus increasing the quality of care. The scope for errors and incongruent efforts by different members of the multidisciplinary team would also have been reduced.

How can I develop from this?
In the long-term I would like to study the decision-making processes regarding client centred practice, autonomy and consent in palliative care. Studying the Liverpool Care Pathway and GMC guidelines has already been useful to me. If these issues do not become clearer to me over the next few years, I will seek opportunities to speak to a National Health Service palliative care specialist for his or her opinions on the scenario I have reflected on above.

I still believe that dying will be a more positive experience if people do it activley rather than seeing it as something that happens to them passively against their will. In the future I may campaign to increase autonomy of and true client-centred care of dying patients. I am not sure how to do this because it would involve people thinking about death in advance (before it is too late), and in my limited experience, that seems to be something that most people do not want to do.

References:
1. Marie Curie Palliative Care Institute Liverpool (2008) Liverpool Care Pathway for the Dying Patient Goal Definitions / Data Dictionary Version 11. MCPCIL: Liverpool
2. General Medical Council (2006) Good Medical Practice. GMC: London
3. General Medical Council (2008) Consent: Patients and Doctors Making Decisions Together. GMC: London