Spending my weekend doing some auditing as my life is so exciting. Actually, it is really interesting, I am having a look at how people die with metastatic melanoma, and whether that’s been affected by novel agents.
I have volunteered to make an assessment of whether the deceased patients in our cohort had a “bad death”.
I am thinking of things like chemotherapy in last week/month, or death in ICU , or death in a resuscitation (although if the resuscitation and ICU admission were not futile, then that does not necessarily make them bad, does it….)
Are there proposed criteria for a “bad death” and a “good death”?
Thanks for helping me with my homework!
Maybe a bad death is different in different settings. In my job in a hospital consultation service, a bad death occurs when there is lack of clarity or realism in the goal of care (eg. a clearly dying patient having lots of investigations and treatments) and when communication with the treating team is poor.
Dying in ICU is concerning but does not necessarily mean it’s a bad death, maybe the patient, family and treating team were hopeful of a good outcome and it was possible but sadly didn’t happen.
I really hate hearing about patients who were restless at the end of life and it was not treated appropriately… it’s not often that people die in pain but I do see patients who need more medication for restlessness.
My pet hate is when patients are dying and some dill gives them Narcan (rarely thank goodness) because they are drowsy, then they are not as drowsy but still dying AND in pain to boot.
Thanks for the post. This is a really important question. I think that healthcare clinicians often see the bad death through our own lens. We assume what makes a bad death based on our own experience. As you say an ICU visit may be a bad death but it may not. From my perspective a lot of this determination depends on the goals and preferences of the individual patient and their family (which may or may not be available for your audit.)
It may also be that our approach of thinking of deaths as good or bad is also a little too simplistic. Death is always bad to many regardless of the circumstances, and yet elements of good experience are common.
Rather than framing it with such valence if you highlight events that trigger clinical concern (e.g. as mentioned above poorly controlled symptoms and ICU admission) you can frame the risk that these are “bad” outcomes without having to be that simplistic. If you can link any outcomes to advance care planning or other goals of care data that you have that will probably also be really helpful.
My apologies if none of this is a direct answer to your question.
As you and Michael have said, judging a “good” or “bad” death depends on the dying person’s goals and values. If no one has elicited those goals and values, is it a “bad death” by default?
It’s an important question to answer, as there are no post-mortem patient satisfaction surveys.
The list below was put forward sometime ago now, by the editor (? former) of the BMJ. I still find his list mentioned from time to time, when people talk of a “good death”. I know it is nebulous and may not be what you are looking for, however in an “ideal” world, this seems as good as any.
Principles of a good death (Smith R, 2000)
To know when death is coming, and to understand what can be expected
To be able to retain control of what happens
To be afforded dignity and privacy
To have control over pain relief and other symptom control
To have choice and control over where death occurs (at home or elsewhere)
To have access to information and expertise of whatever kind is necessary
To have access to any spiritual or emotional support required
To have access to hospice care in any location, not only in hospital
To have control over who is present and who shares the end
To be able to issue advance directives which ensure wishes are respected
To have time to say goodbye, and control over other aspects of timing
To be able to leave when it is time to go, and not to have life prolonged pointlessly
Smith R (2000). A good death: an important aim for health services and for us all. British Medical Journal. 320:129-130.
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That is brilliant, thanks very much Es!
That is exactly what I needed…