Whether we are patients or clinicians, health care confronts us with some of the most difficult decisions we ever have to make. Some of these decisions are literally matters of life and death. If potentially curative treatment might be overly burdensome or ultimately futile, for example, should we opt for this curative treatment or for palliative care which seeks to manage symptoms and improve quality of life? Decisions like these become even more difficult when we must speak not for ourselves but for our young child or an elderly loved one who can no longer express their own views. The two frameworks presented here will not make these decisions easy. They will however help to ensure that you will not overlook anything important as you go about making these difficult decisions.
The first framework is part of the tradition of rhetoric which can be traced back to the Greek Isocrates (436-338 BCE). In 1902, Rudyard Kipling expressed something of this tradition in a poem:
I keep six honest serving-men
(They taught me all I knew);
Their names are What and Why and When
And How and Where and Who.
While Kipling names six, there are in fact eight of these reality-revealing questions. Here is a list with a brief description of the things which they ask us to consider:
What? This is the most important question, but it is also the hardest to answer. Indeed, we may have to answer every other question before we can confidently answer this one. All things considered, what is our moral assessment of the proposed treatment? For example, except in emergencies, treatment given without appropriate consent could well be medical trespass or assault. Or treatment which offers few benefits while imposing significant burdens may well be overly burdensome treatment which the patient may reasonably refuse.
Why? Why is this treatment being proposed or considered? This question invites us firstly to reflect on our motivation for proposing or considering this treatment. Is a clinician proposing this treatment only because they feel that they have to do something? Or is the patient considering this treatment only because they afraid of dying? This question also invites us to reflect on goals of care. What goals of care are important for the patient? Is this proposed treatment a suitable means to achieve these goals?
Who? If we are a patient, this question invites us to both ourselves and our clinicians. Who am I? At this time in my life, what is important to me? Is this proposed treatment consistent with these goals? What about my clinicians? Do I trust both their clinical expertise and their care for me? If we are a clinician, this question invites us above all to reflect on our patients. Given who this patient is and given their values and goals of care, is this treatment truly appropriate for them?
How? How things are done can be vitally important. There are right ways and wrong ways of breaking bad news to a patient, and right ways and wrong ways of helping patients to decide what treatment is appropriate for them.
Where? and When? These questions invite us to consider logistics. If a proposed treatment involves many sessions on many different days at a location far from a patient’s home, he or she might have to consider whether this treatment is even possible for them. Or again, a clinician might have to consider if there is another way of providing this treatment to this patient.
Consequences? What are the likely consequences of having this treatment? What are the likely consequences of other treatments or doing nothing? Consequences are only one of many factors which we must consider. Even so, they are often quite a significant consideration.
Alternatives? What alternative courses of action are there? When we brainstorm every possibility, we are sometimes surprised to identify a much better course of action than the one we are currently considering.
This first framework helps us to identify all the factors which we should consider as we engage in ethical decision-making. The second framework uses the letters of the word DECIDE to set out a process for this decision-making:
Define the problem: This means that we gather all the information revealed by the reality-revealing questions.
Ethical review: What are our values? Are there any relevant moral principles or ethical guidelines? For example, Catholic ethics holds that while we should accept the ordinary means of preserving our life, we may refuse treatment which is either futile or overly burdensome.
Consider options: As was noted above, we often have many more options that we initially realise. Brainstorming every possibility is therefore an important step.
Investigate outcomes: What are the likely benefits, risks and burdens of the various options?
Decide on what to do: Even if it’s difficult, a decision has to be made. We should listen to our head and try to make sensible decisions. But we should also listen to our heart and ask: ‘Do I feel at peace with the decision I am making?’
Evaluate results and review: As we follow the course we have chosen, we should continue to monitor its outcomes. If these are different from what we had expected, we may have to review and revise our initial decision. When we make our initial decision, it makes good sense to also identify a time when we will review this decision. Regular reviews are important because what is important to us can change over time.
If there are difficulties in deciding, or disagreements about what to do (e.g. within families, within the treating team, or between the patient and the treating team), a good way forward is to seek ethics consultation and advisement.