I have launched a new business called The Dying Year. Consultations, trainings, and presentations will all now be handled there. Please visit me!
During the pandemic, it is still possible, and is preferable for many, to care for your own dead at home before burial or cremation. We do not currently anticipate that immediate cremation will be required, but we should be prepared for that to change. I am an experienced Home Funeral Guide who has assisted over 50 families to have a home funeral. There are some very practical and simple safety guidelines to add during this health crisis. I can be reached at 734-395-9660 or email@example.com for more information. Also see The National Home Funeral Alliance, The Green Burial Council, the and this excellent 7-minute video that provides a basis of instruction for trained home funeral guides on how to proceed.
My good friend died recently. During her illness, I realized early on that I would have to try really hard not to try to be her doula because I was her friend first. Looking back, I did a lot of doula things, but it was always on the fly, spontaneous, and mixed in with friend things. She never asked for a sit-down doula consultation, but we did talk about end-of-life issues and decisions. One of the ways we did that was as she asked about my work and teaching. She quietly took it all in. Occasionally, in the midst of talking about our children or current events, she asked for information. I tried to be available to her when she needed me.
My friend was sick for a very long time. She went in and out of remission, was relatively well for years, and then months, and then declined slowly. About three to four weeks before she died she mentioned that the hospice nurse came the day before. This was how I found out that she was in hospice. She wanted hospice because she wanted to die at home and knew that, if/when a crisis occurred, her family would need support to be able to care for her at home and not call 911. She knew what she wanted and how to make it happen. Despite many crises in the last few weeks, she did not go to the hospital. Her family rallied to care for her, and she died peacefully, surrounding by their loving support, at home.
Her family cared for her after death as well. Over the years, I had shared several times about helping families to have a home funeral. I don’t know if she did Internet research, or even talked with her partner about the things we had talked about. But about two weeks before she died, she called me and told me that her partner wanted to keep her body at home for a day after death and have a home visitation. She asked if that was possible. I said it certainly was, and proceeded to tell her the story of my uncle’s death and home visitation last year, when the hospice nurse had helped my cousins wash and dress his body. I never talked to her partner directly about this. He did not call me after her death; he texted me when she was getting close and again when she had passed. I was informed about the visiting time at the home and attended. As I was saying good-bye to my good friend, he remarked, “The hospice nurse offered to help us wash her, but we said, ‘no, we got this.’ We did it all by ourselves.” They did it, as they needed to, as was right for them. My prayer is that knowing they did everything themselves will help them in their grief journey.
In 2014, the National Institutes of Health published the landmark report Dying in America in which they made several recommendations regarding end-of-life care, namely, that we need:
- Comprehensive person-centered, family-oriented end-of-life care;
- More education and better standards for doing Advance Care Planning;
- More end-of-life care providers of many disciplines who are better trained; and
- Better policies and payment systems to support high-quality end-of-life care.
What the Future of End-of-Life Care Looks Like
Recently, Next Avenue Blogger Denise Logeland published a summary of interviews with experts about What the Future of Caregiving Looks Like. They stated that in the next 10 years there would be:
- A great need for alternative care providers due to an aging boomer generation with fewer children;
- Better models that don’t require residential care facilities (keeping people at home);
- Entrepreneurs figuring out how to better use cell phone technology in caregiving;
- A noticeable gap between lifespan and “healthspan” (we are living longer but not necessarily in good health)
- More conversations about a “good death” with less technological intervention, at home;
- Robots sharing in caregiving;
- Intentional, inter-generational senior housing to reduce isolation and promote interdependence (rather than independence).
End-of-Life Doulas as the Solution
These recommendations and predictions point to the widespread need for end-of-life doulas, because end-of-life doulas:
- Provide high-quality, wide-ranging, family-centered, personalized care;
- Help people stay home, which is where most people say they want to die;
- Keep costs down (by helping people stay at home);
- Are “alternative care providers,” meeting the needs of aging baby boomers (one-third of whom are single and one-quarter of whom do not have children or support systems nearby).
- Are trained in Advance Care Planning; and
- Provide one-to-one compassionate, non-medical care and support.
In the future, robots and phone apps may indeed be able to help with simple caregiving tasks and monitoring, but they will never be able to help folks talk about a “good death” and how to prepare to die naturally at home. With the development of additional technological support systems and the increasing number of “elder orphans,” end-of-life doulas are even more needed to help individuals navigate the myriad choices at the end-of-life. It just makes sense, doesn’t it? We are living longer, apart from our family members (if indeed we have any), and wanting to plan ahead and die a natural death at home. Care facilities are becoming more expensive and isolating.
Personally, if it doesn’t work out to live with one of my children, I’d like to form a group home with my friends and hire a doula or two or three to live with us and take care of us. Doesn’t that sound nice? Won’t you be my doula?
The Death Positive Movement is zooming! I am being asked to speak in all kinds of venues: Senior Groups, Libraries, Cemetery Boards, congregations. The recent Advance Care Planning presentation was jam-packed and vibrant. Everyone wanted to know about End-of-Life Doulas. Curiosity leads to wonder and respect and recognition of the importance of this role in helping individuals who are facing death and the families who are caring for them. Learn more here.
We had 29 people at Death Cafe last week! Our biggest ever, with 14 new people. The conversation really opened my heart in new ways as people shared candidly and honestly. We all remarked about how “real” it was. One of the biggest challenges I have faced recently is how to advise folks who don’t know who to choose to be their healthcare advocate. An advocate is someone who will speak for you if you become incapacitated. They need to know what you would want, what gives you quality of life, what you would be willing to sacrifice and what you would not. This requires conversation, not just once but multiple times, and each time your healthcare situation changes. There are a large number of people over 65 who do not have a life partner nor children and for whom it seems there is no obvious choice of advocate.
These are precisely the people for whom it is most important to have an advocate! It’s a difficult situation. Is there a co-worker, neighbor or friend who you could talk to? It doesn’t have to be permanent; you can revoke your advocate and choose another if your situation changes and someone else can step into the role. The most important thing is to choose someone and to discuss with them the following:
- Are they willing to speak up for you, even if they don’t agree with your choices?
- Will they be available?
- Can you talk to them about
- What quality of life means to you?
- What you are willing to sacrifice and what you are not?
There are professionals out there who will be your advocate for a fee. But first consider if there is someone you know who is willing to take on this responsibility. Write it all down. Write them a letter in a narrative format so that they can hear your voice if they are ever in the position to have to speak for you. An Advance Directive form, with it’s standard check boxes that are not personalized, isn’t enough when life and death situations arise. Include in your letter what a good day would look like and give them permission to forego further treatment if that good day is unlikely to ever be able to be achieved again. The consequences are too high to NOT do this. Tell them you know they will do the best they can and then say you forgive them. Thank them. This is a big job. But if you can’t speak for yourself, do you really want a doctor who doesn’t know you to make these decisions? Or worse yet, an ethics committee? Better someone who knows you and has talked these things over with you.
And then hopefully it won’t be needed. But hope is not a good plan.