My mother died nine months ago after my brother and I decided to stop all the medical interventions that were prolonging her life. My mom had asked us to make health care decisions for her if she could not make them for herself. When the doctor and nurses recommended that we “let nature take its course,” my brother and I felt sure this was the right decision. We knew there were interventions that could keep her alive, but we thought she would consider them too aggressive. I never imagined how hard it would be, but somehow we got through it.
In the last month or so, I have found myself questioning that decision. Did we do the right thing? My best friend’s husband was shocked when he heard that we, in his words, “gave up on her.” He straight-out told me that what we did was wrong and unethical. My brother continues to seem at peace with how our mom died. I’m afraid if I bring up this subject, I will only upset him. But, at times I feel tortured about all of this. How do you know you’ve done the right thing?
In the days and months after the death of a loved one, it is normal to replay the countless details of the person’s illness. We review conversations with health care professionals about treatment options, and, revisit the exact moment of deciding to focus entirely on the person’s overall comfort while allowing death to occur. This is a life-changing moment, for the person who is dying as well as for the family and friends who live on.
We all feel the weight of such choices. This heaviness may make us wonder if we did the right thing. Far from being a sign that we’ve done something wrong or unethical, the anxiety, sorrow and uncertainty that remain after a death are likely a measure of how deeply connected we are to the person who died.
The question – How do you know you’ve done the right thing? – is one of the most common, and haunting, uncertainties people express in the aftermath of a death. This may be especially true when the death follows an explicit choice to set aside on-going attempts at medical rescue and to focus instead on interventions expected to comfort the dying person. This article offers some thoughts about this unsettling experience of ethical uncertainty, that is, the wondering if you’ve done the right thing.
Making health care decisions
When we think about making decisions for ourselves, many of us have definite ideas about the health care we think we will want near the end of our lives. If we are able to speak for ourselves, “doing the right thing” means voicing our wishes to accept or to refuse life-sustaining treatments and having these wishes respected by our family and professional caregivers. When we have clarity about our preferred goals for end-of-life care, this clarity seems to lessen the experience of ethical uncertainty for everyone involved.
However, the daughter’s story above paints a picture of a far more common scenario, when someone else makes decisions on behalf of the person who is ill. This may happen when someone is seriously diminished by illness and simply wishes to leave decision making to others, or when the ill person is no longer able to speak for themselves.
When a person cannot make health care decisions, a spouse, adult children, other relatives or close friends, may be called upon to represent the ill person as a substitute decision maker. While we may feel very confident about making our own health care decisions, we may feel less confident about making these kinds of decisions for others. It is in this kind of circumstance that “doing the right thing” often creates ethical uncertainty.
Deciding for others
For the moment, put yourself in the place of the daughter above and imagine you have been asked to represent a loved one; that is, imagine you have been called on to be a substitute decision maker. The answers to these questions may help you understand this role:
- Why have you been asked?
- Why would you take this on?
- What have you been asked to do?
- How are you to undertake this task?
When individuals ask others to represent them, they are expressing a profound trust in those they have chosen. They are trusting that who they are and what they believe is important will be faithfully brought into the conversations and planning needed to direct their health care.
For the most part, people accept the role of substitute decision maker as a way to show their love and concern. The bonds of family relationships and friendship create duties and obligations that we act on both in ordinary, everyday life, and in extraordinary, life-changing moments of illness and death.
At times people take on the task of substitute decision making because the ill person has directly asked them to do so. When there is no direct request, health care providers usually see those who are closest to the dying person as sources of critical information about the person’s values, beliefs, wishes, goals and preferences. Such information is essential to plan the care that best serves the dying person’s overall interests, which include physical comfort, social connection, emotional well-being and spiritual integrity.
Substitute decision makers are expected to “take on the mind” of the person who is ill. They need to express what they know of the person’s specific wishes and/or to express what they believe the person would want in light of what has actually come to pass.
Substitute decision makers need to consider the goals of care and the treatments that might achieve these goals by answering questions like these:
- If my loved one could see what is happening now, what goal would make sense to her?
- What therapies would she consider beneficial or worth doing?
- Are there interventions she would consider a burden or not worth doing?
- If a cure is not possible, are there harms she would want to avoid or attempt to minimize (e.g. pain, suffering)?
- Are there things she would most want to protect or promote (e.g. companionship, spiritual well-being)?
Does feeling sad mean we did the wrong thing?
The ethical work of a substitute decision maker is a delicate task for human beings. When representing someone else, we do not stop being ourselves – son, daughter, sister, brother, spouse, life-long friend. In the time following the person’s death, the pain and grief that survivors sometimes feel may be seen as evidence that a “wrong” decision was made.
This difficulty is reflected in the daughter’s description of how deeply affected she was by her friend’s husband saying she and her brother had somehow abandoned their mother to death – “that we, in his words, ‘gave up on her,’” Such a judgment could be devastating to someone who has tried to faithfully represent a loved one at one of life’s most critical moments. We can appreciate the daughter saying she feels “tortured about all of this.” We can imagine she is haunted by the thought that surely a “good” person would always want to prevent a loved one’s death, that a “good” person would feel obligated to preserve the life of a loved one.
Such feelings are understandable. They may feed the sense of uncertainty experienced by anyone who acts as a substitute decision maker. Many people acknowledge a deep sense of ambivalence in this role – wanting their loved one to die as peacefully as possible and also wanting to have their loved one restored to them and have life return to normal. As in other areas of human life and experience, we act despite ambivalence.
The “right thing” – the heart of the matter
It may be helpful to consider that the question - How do you know you’ve done the right thing? – is at its core an ethical question and not simply a technical or medical question. It is a question that challenges us to consider how we may or ought to act in order to honour or respect another person’s humanity and our own.
Representing our loved ones, and helping them to live life well until the moment of death, is a commitment to the good of another person. It is, by definition, an ethical undertaking. The certainty that a substitute decision maker may eventually know is well described by one author as a kind of certainty that “… thoughtful, compassionate, honest attention has been given to a deeply troubling, perplexing human problem”1.
1. Albert R. Jonsen, Foreword , xix, in Complex Ethics Consultation: Cases That Haunt Us. Cambridge: University Press.
To read more
Ford, P.J. &Dudzinski, D.M. (Eds.). (2008). Complex Ethics Consultations: Cases That Haunt Us. Cambridge: University Press.
Content reviewed May 2019