Family Conversations About End-Of-Life Care
http://thedianerehmshow.org/shows/2012-08-08/family-conversations-about-end-life-care
Talking about death and dying is never easy. Many of us cling to the childhood belief that parents are invincible. But avoiding an end-of life conversation with a loved one could have tragic consequences. It might mean a surrogate who has different values from your mother could end up making decisions for her. Or that your uncle won't qualify for Medicaid because he didn’t understand the process. Armed with basic facts and good listening skills, it's possible to create a strategy that gives a loved one comfort and provides caregivers with peace of mind. Diane and her guests explore how to begin discussions about end-of life care.
Guests
Janis Abrahms Spring
clinical psychologist and author of "Life with Pop: Lessons on Caring for an Aging Parent" and "After the Affair."
Sue Belanger
clinical ethicist and adjunct assistant professor at Georgetown University School of Nursing and Health Studies, and director of education, training and research at Sibley Memorial Hospital in Washington, D.C.
Charles Sabatino
director of the Commission on Law and Aging, American Bar Association.
Comments
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My husband made the decision to go into Hospice care at the end of April 2012. He died 30 days later.
During that 30 days our friends and neighbors had a get-together for my husband. We served margaritas (his favorite) and told stories and shared our tears. He also was 'roasted' by an environmental group that he helped build up within our area.
It seems very odd to say that I am now grateful that he knew he had a chronic and progressive disease for over 18 years. We are fortunate that it did not impact him until two years before his death. However, we talked about EVERYTHING, death was NO scary, people got to say what they wanted to say to him and he was able to share his strength and his fears with me.
We need to start EARLY with children to help them understand that death is a fact of life, and nothing to be ignored. Talking relieves fears, stress and makes the end-of-days calmer
This will be two posts -
I have been honored to walk this path with family & friends. A friend's father had a tube placed down his throat. He was dying frustrated & anxious. We stood by the bed & I said "He wants to be able to speak with you, tell you he loves you & he can't because of the tube". It was removed & he passed with dignity & spoken words.
DOCUMENTS - In an envelope in a plastic bag in refrigerator where person lives & note on its door; tell family members where to look in case of emergency. All family members keep another envelope in their trunk. A copy will always be available for appointments, hospital, etc.
HOPE–A person may not want to create a document because they are keeping faith for a cure/miracle. Understand someone waiting/praying for a miracle can have the view action of this type is proof they don't have reliance on their faith. Something in writing is like saying I don't have a doubt God will intervene. A better approach would be conversation the progression of the disease or not remains in God's hands; helping family & medical staff bring you comfort is in your hands. You are to be a steward of your temple.
I don't think any age is too young to have these things written down; accidents can happen. My daughter is 27 & unmarried, she has things in place; I am 57, mine have been in place for 15 years. We tend to wait. If the adult child will take these setps, that can begin a conversation. I've been neglectful myself of this matter.
Part TWO -
As a person ages & is ILL they become overwhelmed! My father was very clear in his direction to us. While in transition he would "change his mind". It took all 3 siblings reminding each other this person now was just a shadow of our father, to stay the course he set out for himself and us.
A friend engaged in end of life matters is a teaching moment for my daughter. We discuss what is happening & what I'd want.
We relinquish control to others without much thought in two areas-the process of birth & the journey of death.
My parents are in their early 70s and healthy, so I was pleasantly surprised last year when Mom took me to the funeral home where she and Dad had already bought their coffins and burial sites. She showed me the lining, etc, of both of their coffins. Blue is her favorite color but she chose pink, so I asked why. She showed me the blue lining and said, "That will make me look dead." Trying to keep a straight face I asked, "But isn't that the point?" After sharing a good giggle I thanked her seriously for making those decisions and taking care of it before I and my sisters had to do it. Losing Mom and Dad will be hard enough without having to guess at what they want.
But now I realize that we did not discuss the more difficult questions of where and how they want to spend their last days.
Diane,
Thank you for airing this show, which will certainly initiate some discussions that many people put off until it is too late. It has given me a good opportunity to broach the subject with my parents, who are in their early 70s and thankfully still healthy.
On a related note, I've recently become acquainted with a wonderful organization that aims to take the burden off of families when they have a loved one pass away, especially when they live far away from the person who has died. Bereavement Concierge Services (BCS) was formed by a friend of mine to help people manage all of the activities that need to be completed when they lose a loved one so that they can focus on themselves and their family. They work as a single-point of contact 'concierge' to manage ritual planning, financial and legal management. As far as I know, they are a one-of-a-kind organization with a mission to make a difficult time a little easier. I think it's such a good idea, I wanted to share it with your listeners. Their website is www.letBCShelp.com
Thank you again for the critical information you provide every day!
Thanks for this very important discussion. As an Advance Care Planning Facilitator, I frequently find that people do NOT have a plan for the end of their life, leaving their loved ones scrambling and often guilt-ridden when difficult decisions need to be made. I present Advance Planning to people as one of the best gifts that you can give to your loved ones - the peace of mind that they KNOW what you do and don't want at the end of life so that, in the end, they don't have to deal with grief complicated by crippling guilt.
I would also suggest that while attorneys are the best people to deal with legal paperwork, they are often woefully ignorant as to the medical ramifications of the decisions that their clients need to make to complete good documentation of end-of-life wishes. When I do workshops that explain those ramifications in detail (especially use of feeding tubes and ventilators, as well as CPR-attempt decisions for those filling out POLST forms), I find that people who had forms prepared by attorneys often need to go back and change them because they didn't understand what they were initially choosing.
I do agree with today's guests that DOCUMENTATION and DISCUSSION go hand-in-hand - neither is complete on its own. The documentation provides as skeletal structure of your wishes, but it's your discussions with loved ones that will create the substance that allows them to extrapolate in the diverse situations that can come up at the end of life. So when having those discussions, what you want to explain is WHY you choose this, WHY you choose to refuse that. Most importantly, explain what makes life worth living for you and, conversely, at what point life would no longer be worth living. Be as clear as you can with EVERY family member who could be at your bedside at the end of life so there is minimal room for conflict between them.
Truly, this leads to peace of mind for all involved. Don't wait until the crisis hits - do it now!