What matters most to you? Being at home, being comfortable, having time to say goodbye and/or having support for your family? When I was asked recently ‘what is a good death?’ and ‘what does death with dignity really mean?’ I hesitated. I have worked with hospice nearly my whole career, but I am learning all the time and I realize the answers can be very different depending on one’s values.
When Kehl et al researched this in 2006, they began by saying that “the concept of a good death is highly individual, changeable over time, and based on perspective and experience.” However, there is agreement on the following attributes:-
- Being in control
- Being comfortable
- Having a sense of closure
- Affirming the value of the individual and his or her life
- Trusting the care providers
- Recognizing when death is near
- Minimizing the burden on family
- Honoring beliefs and values
- Optimizing relationships
- Appropriateness of the death—timing, use of treatments
- Leaving a legacy or being remembered
- Involving family as they choose and supporting them
When surveyed, the great majority of West Virginians say they want to be at home, but Kehl’s concept of a good death recognizes that it is more important to find out what your beliefs and values are so they can be honored and does not mention where a good death should be. It can be very difficult to know when to change from an aggressive curative approach to hospice. In his book ‘Being Mortal,’ Atul Gawande tells a story about a young couple battling cancer that illustrates this. They wanted to be at home, but waited too long.
Hospice care is a choice and people will choose hospice at different times during a serious illness, but the important thing is that health providers ask people what matters most to them. This can change over time. I know that I would want to know if I had a serious illness with a limited life expectancy. I might hope that I could live longer, but I would want to choose what to do with the time I have left. Most of my family lives far away and they would need time to say their goodbyes. If you don’t want to know, you could share that with your health care provider, but if you do sometimes you need to ask. This will help you with the first and most important thing for most people: being in control and the rest should follow. If you choose hospice, you will have the opportunity for a good death as your team will find out what matters most to you.
As Dame Cicely Saunders, founder of the hospice movement, said “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”