In medicine we hear the expression “quality of life” used frequently. We don’t often hear the expression, “quality of death.” That’s probably because we intuitively feel that death is a universally bad thing and it doesn’t seem right to think about some deaths being “good.” But might we be missing something here?
We are not a society that easily talks about death even when we or a loved one is approaching that transition. We are afraid of upsetting each other, dashing hopes, superstitiously feeling that by talking about it we may make it happen sooner, or that it just doesn’t seem to be good manners.
As someone who has spent the last 10 years full-time in end-of-life care, let me tell you that some deaths are much better than others. Not talking about death has its consequences and one of those consequences is ending up with a poor quality death. You might think that the elements making a better or worse death would vary greatly from person to person, but in reality, people are remarkably similar in this respect. When polled about preferences at time of death, most indicate they would like the following:
- To be free of pain and other uncomfortable symptoms
- To be at home
- To have loved ones present
- To have an opportunity to say “good-byes” but not have the dying process prolonged unnecessarily
- To have access to spiritual or emotional support when desired
In my mind, a “good death” is when we are able to fulfill these nearly universal wishes. The “quality of death” declines as we become less able to honor these desires.
Though there is sadness of loss accompanying all deaths, “good deaths” can be at the same time warm and uplifting and important bonding experiences for family and loved ones. When the above wishes are met, deaths can be celebrations of life and can be elevating and positive spiritual and emotional experiences. “Bad deaths,” particularly those in intensive care settings tethered to machines, are often harsh, cold, and frightening experiences. When someone has an advanced illness and life expectancy is limited, helping to ensure a “good death” when the time comes is an important priority for the medical team and for the family.
Some deaths in intensive care are unavoidable – there’s been a bad accident or unexpected medical catastrophe and death occurs while everything is being done to diagnose and treat the problem of sudden onset. Most “bad deaths,” however, take place when families are disagreeing about what to do or are pushing “to do everything” in face of an illness that is already known to be terminal. Usually, the patient is no longer able to speak and direct his/her own care. Everything is done to prolong life, even though
the consequence will inevitably be a prolonged dying process and a “bad death.”
Most “bad deaths” are avoidable. Writing a Living Will is one way to help ensure that loved ones know your wishes and that those wishes will be honored. At least as important is choosing a capable “healthcare surrogate” – someone who knows what you want and what you do not want and will advocate forcefully for you when you are unable to speak for yourself.
Healthcare surrogates cannot do their jobs if they do not know what is important to you at end-of-life. Once again, we have to be able to talk about death. We have to acknowledge openly that all of us will die one day. We have to let people know that the quality of our death has value to us and that we want to talk about it to help achieve the death we want. I am writing this at holiday time approaching the new year. It is a time of joy, good cheer, new beginnings, and reflection. It is also a time when families are together. It is the perfect time to take a few moments to have these important conversations.
If you or a loved one needs help discussing any end-of-life issues, feel free to call Halifax Health – Hospice at 800.272.2717. For online help with advance directives – writing a living will and choosing a healthcare surrogate, you may want to visit some of these websites.
ABA Consumers Toolkit for Healthcare Advance Planning