What is a Good Death?
What constitutes a good death? Many among those who’ve approached death themselves, or assisted dying people, have contemplated this question and made suggestions on this subject. The following discussion of factors that support a good death is neither comprehensive nor thorough. There are so many divergent thoughts on the topic of a good death that an entire text could be devoted to that subject alone.
But some fairly common themes emerge when one gathers such information.
Dignity or a Sense of Control
The word dignity appears again and again in the literature about a good death. If it is possible for dying individuals to be mindful and plan for their own end-of-life experiences, a sense of control over some of the process emerges.
There are systems that support this control, such as the use of living wills or advance care directives that set guidelines and boundaries on the care that one receives and legal documents granting power of attorney (POA) or mandates for healthcare decisions to a trusted loved one or guardian, when and if the ill or dying person is no longer able to assent or dissent in such matters. Discussing and establishing do not resuscitate/do not intubate (DNR/DNI) orders, or the latest code status of allow natural death (AND), can also assist in the dying person’s perception of some control.
And that is what the aspect of dignity is when a person is dying: a perceived degree of control over the process of death.
Talking About a Good Death
Talking about death and dying is the first step to reaching an understanding with the significant parties who will support or be involved in any level of end-of-life care and decision making. Fully informing all involved persons—caretakers, physicians, and family members or guardians—of one’s preferences and proactively creating sufficient signed documentation to follow through when the time comes are essential elements to ensure that a dying person has some degree of control or dignity when the end of life approaches.
Documented directives must be tailored to specific situations, locations, and preferences; and the laws and policies governing them will vary in different locales. They may cover a variety of issues other than resuscitation and intubation, such as placement of feeding tubes and intravenous hydration or withdrawal of life-sustaining treatment at the very end of life.
Some people want pre-established guidelines to honor their preferences of home, hospice, or hospital settings at their end of life. Others want to outline the manner of pain management and palliative care they prefer, as well as the degree of lucidity they might be able to sustain through their transition.
Consciously preparing such documents, with the knowledge and cooperation of loved ones and clinicians, can be an important step toward the goal of perceived control and dignified death.
Do Not Resuscitate Orders
Conversations between terminally ill patients and their physicians about setting up DNR (Do Not Resuscitate) orders are not as common as one might expect. Many studies indicate that discussing these important issues is not done regularly, even though having that conversation results in more desirable end-of-life scenarios.
Since we cannot predict the future, it’s wise to have these conversations with significant parties involved in one’s care even if there is no diagnosis of a terminal disease.
The term code comfort signifies to healthcare staff that the patient has a DNR order or written directives. It can also let the staff know that the patient is now moving into palliative care mode or hospice care and family may need support as well. This cue provides a necessary mind shift to medical staff, volunteers, and family; compassion, empathy, kindness, gentle touch, and speaking softly are the direction to go.
Not Everyone has a Good Death
Even with the best of plans and legal documents in place, there are times when care falls short of the directives on file. The best-laid plans may unravel when practical hurdles and multiple interpretations by various medical personnel result in the documents providing less than optimal guidance when they are needed most.
Also, there are examples where advance care directives or living wills were disregarded when the medical professionals involved did not agree with the paperwork, as it falls short of their oath to do no harm.
What About Assisted Suicide
While most who weigh in on the topic agree that dignity is closely related to perception of control in end-of-life care scenarios, some go further to assert that being able to choose the timing and the manner of one’s death, especially in cases of terminal illness and chronic or unrelenting pain, is the ultimate manifestation of dignity at life’s end.
Thus, the terms dying with dignity, assisted suicide, and death with dignity have emerged in the media; and many organizations are devoted to furthering the cause of those who believe in its humane value and people’s right to claim it rather than continuing with no foreseeable quality of life in their future. The “right to die” by rational suicide (self-deliverance) or physician-assisted suicide (voluntary euthanasia) is a very controversial topic in countries around the world.
Communicate with Concern
Along with the perception of control and dignity at the end of life comes the common desire for open communication and full disclosure. Communication affects relationships with doctors and caregivers, the trust placed in them to listen and truly hear the concerns and wishes of the dying and their loved ones, and patients’ trust in the clinicians “telling it like it is” when there is difficult news for them to convey and for patients and families to hear.
Communicating terminal diagnoses and discussing the dying process are often difficult for all involved: dying individuals, those who care for them, health professionals, and families. Societal patterns of avoiding death and dying in our conversations often contribute to a lack of proactive discussions about what we might want and what to expect as we, or our loved ones, near the end of life.
Poor communication then leaves the decision making up to the caretakers and professionals who might be “on duty” when new developments arise or to family members who are ill prepared to make critical decisions. This creates confusion when any of the individuals involved, including loved ones, may be left wondering if the dying person would have wanted something different from what is being delivered. It can also create long-lasting feelings of guilt or self-doubt when a family member makes a life-altering choice on behalf of a dying loved one.
Follow the Dying Person’s Wishes
But full and open communication is not always desirable. There may be circumstances in which dying persons do not wish to be told what is happening. Sometimes those who’ve been told grave news may not wish it to be shared with anyone else, or not with select others, as the dying individual may wish to protect others from the anguish of knowing death is near.
Depending on the conditions, ill people may wish to focus on life continuing as normally as possible for as long as possible, avoiding any further discussions of their disease progress, prognosis, and impending death. Honoring this wish for “death denial” may be frustrating for others, such as family members and caregivers, especially as death approaches and they desire to create appropriate support systems, including discussions about palliative treatment options and where the dying may wish to spend their last days and hours.
Reluctance to communicate fully and openly can also be an issue for families, even when dying people are ready, willing, and eager to discuss all options and upcoming expectations. Avoidance of these significant conversations can leave family members and caring others feeling guilty and anxious after the person dies, adding to their bereavement and grief.
‘Considerate Conversations’ Enhance Intimacy
Conversely, proactive and considerate conversations among the dying, their families, social services personnel, health professionals, and caregivers can shape the desirable and individualized care that each dying person wants to receive. Open communication can enhance outcomes and the development of adequate support. It can also inspire confidence in all the involved parties to face each next stage of the shared process. Sensitivity is a key component; insensitive or impersonal communication does not inspire greater peace or confidence and can be very traumatic to all involved parties.
Sometimes the unwilling party is the medical provider. Some doctors are unwilling to talk about palliative or end-of-life options and will instead either defer that job to other physicians or continue to speak of aggressive treatment options, life-prolonging interventions, and therapies right up until the time of death.
For some of them, addressing death as a part of life is tantamount to an admission of failure, of giving up what they’ve been trained to do: prolong life and convey the possibility of hope. They may persist in this attitude even when all chances of a quality of life are gone. Some may not be willing to support the medical care of persons who choose to let go and give up aggressive treatments or interventions. These doctors are not comfortable counseling patients about end-of-life options and settings.
How can we plan for death if we aren’t willing to talk about it? This is as true on a societal level as it is on a personal one. Death taboos have increased the discomfort and difficulty around this topic as we speak person to person. These taboos also contribute to the avoidance by our communities and governments of proactively creating better systems of support for dying persons and their families. We have inadequate palliative care beds in hospitals and a grave lack of hospice facilities and support teams to care for dying persons and enable quality of life through the end of life. Our refusal to acknowledge death as a part of life will not make it go away.
Communication is essential to connecting end-of-life needs and desires, services, and support.
Each Person’s Good Death is Unique
For this author, having adequate emotional support from family and close friends would be one ideal to contribute to a good death. Being in an environment where my own spiritual beliefs and religious traditions can be personalized and honored is another. If possible, I’d like to be lucid and not suffering too much to appreciate what is taking place (and I do realize these may be mutually exclusive, depending on my circumstance).
I’d like to have meaningful conversations and to convey in writing those personal narratives that are important to me to be passed along to my family and friends. I want to be at peace with each of my loved ones, and they with me, so that I am able to release any old “untended fences that need mending” in my life. I’d like to ensure that I’ve settled all financial obligations.
All these will contribute to my own good death, if I am so lucky.
The Survey Says
A large survey published in the Journal of the American Medical Association (Nov. 15, 2000) reports the following to be most important at the end of life:
- Pain and symptom management
- Communication with one’s physician
- Preparation for death
- Opportunity to achieve a sense of completion
- Mental awareness
- Planned funeral
- Not being a burden
- Helping others
- Coming to peace with God
Many people want to die at home with families around them. Only one in four do so. Being candid with patients gives them the information they need to make the hard decisions. Forgoing treatment is not stopping living. Dying is a very important life event, yet many do not put much energy into making it as positive a life experience as possible. If you are among those who wish to die at home rather than in a hospital bed tethered to tubes and such, forgoing treatment may be a necessary choice for you to achieve this goal.
Talking of Death
Once a taboo topic, death in America comes out of its shell in unexpected ways. Americans today are generally unaccustomed to seeing death and generally want to avoid it as a topic of consideration or conversation. We mourn in private nowadays in sharp contrast to the very public rituals and customs of many earlier Americans or those of non-American cultures.
Since we lead with medical technology in our culture, most doctors do their utmost to avoid the death that is inevitable anyway. As a result, people turn toward a vaguely promised future (of better health) versus living in the present moment. They turn away from the process of what dying is asking of them. Through medicalization of the end of life, we do not truly create more time living; we create more time dying.
Moving Beyond Death-phobia
Our language use can help to transform this death avoidance. For instance, when the word loss is substituted for death, we are not acknowledging the event that has occurred in the same way. A death need not be a loss if we cultivate our relationship with the one who has died. When we use the language of privilege versus ownership, this can help us face death to experience it as “dying wisely.” Death phobia does not allow us to come to our dying as a normal human process. Having an open cultural conversation can allow us to have more knowledge and capacity to choose wisely.
Excerpted from Journey’s End: Death, Dying, and the End of Life (2017) by Julie Saeger Nierenberg, MAEd, and Victoria Brewster, MSW