I was recently watching The Resident on Fox and one of the depictions of the patient’s really resonated with me. As an aside, if you don’t already follow The Resident, let me suggest you try it out. Lots of really interesting behind the scenes depictions of health care! I’m sure it’s not 100% accurate; at the same time, those of us who are professional patients can use the reminder that the healthcare system is made up of people just like us.
Anyway, on the episode I was watching recently, there was a patient nearing a planned death. The patient had set the time of death and the loved ones were gathered around the bedside. A comment was made about the arrangement and the response was that the patient had one hour left to live and had said/done everything necessary to prepare for that passing. The patient was a “one hour person” in the nomenclature of the dialogue and was at peace with that.
In my work with Compassion & Choices and my interaction with the terminal MBC community, death and preparation for death is a topic of much discussion. Because death and planning for death is closer for those of us in these communities, there is more of a willingness to entertain and talk about options and plans.
A willingness, yes; at the same time, it’s still not an easy topic.
Sometimes I wonder why. I do understand that it’s hard, really I do. At the same time, having the discussions or even planning discussed around the desires of the loved one is so key for those left behind. As an example, I’ve reflected a bit about the different funerals of my grandfathers. My maternal grandfather had done some estate planning and completed directives, but not only was that paperwork not very accessible, he didn’t share his preferences for the service or make any plans for what would happen with his body after his physical death. In contrast, my paternal grandfather had literally planned everything down to the last detail and so my grandmother and the rest of the family simply had to show up.
The experience of my paternal grandfather’s funeral is what I want for my loved ones. I want them not to have to think about planning a memorial or planning a service for me. Getting used to life without me in it will be hard enough for them to handle.
Knowing that this is my desire, I have explored how to make this happen. Don’t misunderstand, I’ve been thinking about this and planning in my head for years, it’s not automatic, it’s not easy, and it’s not something that can be done all in one sitting. This exercise is not for everyone and it’s not easy by any stretch of the imagination. Here’s a few key points to consider.
- Consider when Hospice will be involved. I learned some very sobering statistics recently about the average hospice experiences of terminal patients. Despite hospice having some amazing services, the average use of hospice is measured in days. I’ve had some friends who were in hospice for months and I have been able to see first hand how that experience eased their transition and the transitions of their families to their death. My suggestion is to interview as many agencies as are available in your area while you are still well and able to make decisions. Selecting the agency for the factors that are meaningful to you while you are not in crisis mode is key.
- Consider where you want to die. I used to think that there were two options: 1) die at home; or 2) die at the hospital. I’ve since learned that many hospice agencies have a house or clinic available to their patients. That house or clinic can be used as respite care for your loved ones when your illness is a hard thing to handle around the clock and can also be a place to spend your last days or hours. I’ve had an aversion to thinking about dying in the hospital since it can be such an impersonal place; at the same time, I have young children and the idea of dying at home could be difficult for them. The hospice house or clinic feels like a good happy medium to me, but that’s not true for everyone. Thinking about this before you are seriously ill and can no longer make decisions or express your wishes is important.
- Consider what you want done with your physical body. Many of us with odd or unique presentations of an illness with no cure often want to donate our bodies to research. Some people are particularly concerned about being buried in the ground. My paternal grandfather left specific instructions to be buried with his head facing the east and he wanted to be upside down with his feet lower than his head in case his coffin filled with water. Quite specific. Cremation is also something some select, although I’ve heard some concerns about how much radiation and other poisons our bodies contain after cancer treatment. There are also more and more “green” options where a body is buried without a coffin or embalming so that our bodies enrich the earth more quickly and then specific trees are planted to take advantage of said nutrients. Whatever option you choose, remember to consider what your family would find significant.
- Consider what kind of service your family needs. My husband was raised in a more formal religious tradition than I and when we talked about a funeral/memorial service, I was rather surprised to find how much he wanted the formal, liturgical type service where I was leaning more towards a celebration of life. As we discussed it, I realized very strongly that the service is not for me, the person who is dead, but for the family left behind. I’ve done my best to keep this in mind as I’ve made some key decisions about what will happen once I’m gone.
- Consider whether your family would want a physical location for mourning. I love the sea and my preference generally is for my ashes to be spread in the sea, that way anywhere there is water, my family could think of me and honor my life. My husband felt that having a grave for him and my boys to visit would be more meaningful. My plans include both of our desires. I think it is key to remember that the ones left behind need to have access to tangible grief rituals and a location can be a big part of that.
- Consider how you want your life honored. I’ve been reading obituaries as I draft and refine mine and I’ve noticed a trend towards asking for donations to organizations in lieu of flowers or food. Since so many friends and family are spread out over the country, the familiar flower smothered service and tables groaning with the weight of all the casseroles isn’t as common. Since flowers die and casseroles are eaten or discarded, thinking about a more lasting contribution to honor the deceased makes a lot of sense to me. Selecting and designating charities or non profits that are significant to you for your loved ones to honor can be extremely meaningful.
- Consider organizing and labeling your stuff. I’m a packrat and a borderline hoarder (or so my husband says!) and I’ve realized that much of what I’ve amassed during my lifetime is only meaningful to me. I read an article that described Swedish Death Cleaning a little while ago and it resonated with me. The concept generally is that we should be cleaning out and organizing our lives all the time, not just at the end of life. What good are our treasures doing locked away, anyway?!
- Consider taking the time to write your story. There are lots of journals with prompts and ways of preserving your story for the next generations. I love the options that include recording stories verbally. Legacy videos are another option. I’ve written before about different options I’ve selected and you can read more about that here. Your story living on in future generations may take some intentional efforts to share and document that story in the way you want to pass it along.
- Consider righting wrongs and asking for forgiveness. It’s easy to think that there will always be time to resolve an old wound, until there is no more time left. When you have been diagnosed with a serious illness, like I have, it helps at times to put other things into perspective. Arguments and jealousies and disagreements may not seem as important. When you know your time is limited, it’s a great time to think about resolving issues as much as you can. The other person might not be responsive, but getting these things off your chest, I believe is key.
- Consider what’s next. I was raised in the Evangelical Protestant tradition where heaven was always the goal, the perfect place, the destination for those who are “in.” As I’ve grown up and often view the world differently from the way I was raised, that clear destination has adjusted a bit, but I still do believe there is something after the death of this physical body. Whatever your belief system, thinking about and preparing for whatever is next can be an endeavor worth the time.
The bottom line for me is that we all die, we all leave this life. The things we’ve amassed, the money, the possessions, the people; all of that will be left behind. If there are tasks that can be completed now, while I’m feeling like myself and have some energy to devote to them, then I find those tasks to be meaningful to complete. If that doesn’t resonate with you, no worries, it’s just an idea.