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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What I find troubling is that conservatives like to chant "less government" when it comes to matter of the market, but constantly try to leverage the power of government in matter of individuals liberties such end-of-life determination (and abortion).
http://beyond-the-political-spectrum.blogspot.com/2009/11/death-taxesok-...
my parents and I have had the end of life talks. Both parents were more than willing. There is a great deal of resistance generated by churches, pharmaceutical companies, nursing home industry please discuss the resistance generated by life extension money making industries
I'm 59, have been in excellent health outwardly for most of my life. Yet, in the past three months I've had to give "end of life" and "advanced directive" statements twice in the past three months - evidently what I thought was aging (the old maxim "aging isn't for sissies" was NOT aging but a virus that hit my heart. Thank you for having this show. . . .
When we meet with our estate planning clients, we tell them that one of the most important documents which they will execute is the health care proxy (in Mass. - known elsewhere variously as Advanced Directive, durable power of attorney for health care, etc.) but that is not the end of it -- that executing the document is not enough - the key thing is to discuss with the people you choose as your agents what your end-of-life wishes are, partly so that your wishes are honored, but also so they feel good about what they did for you when the end was nigh.
Have spent an enormous amount of time in nursing homes the last five years. Part of the time attending to my father. Part of the time because I became so curious about the health care industry for the end of life. Have interacted with many seniors strapped to their wheel chairs or in beds watching TV or looking at the wall. Some are ok with this some are absolutely miserable. Know if they had the chance they would be more than willing to have end of life talks but for many of them their mental capabilities are just not there. Have those talks before you can not have them
Resistance from the individual or family members to have the end of life talks. But please discuss the resistance coming out of the multi billion dollar end of life extension industry
This provision was part of Obama-care until the the misinformation department of the GOP with the help of the Christian Sarah Palin demonized it by calling it death panels. Can Americans have an honest conversation these days about any issue? And do they hate Pres. Obama that much that they are willing to harm the welfare of the nation? The answer is yes.
end of life - again it's another problem which is solved by taking personal responsibility. This ought to be part of a "Real Life Skills" class in high schools - but also talked about in churches. (Shows like this do a great service to educate about this.)
We MUST talk about the inevitable death we'll all face, and write our advance directives.
However, my husband had one, yet because he was able to speak for himself at the end of an awful battle with cancer, and he wanted SO much to keep living, that he said YES to the most futile treatments, and died after several days in the ICU rather than hospice. Please have your guests address this particular problem.
I also know of a man who -- when he was in his healthy, sane, right mind -- said he didn't want extreme measures taken when he was dying, yet because he was under the influence of pain killers, he said yes to them.
I fear a long protracted dying process as well as a long period of disability in my older years.
I was fortunate in that my late father had a living will and was very clear with instructiions for my brother and I. He passed away this past March suddenly and I will be forever grateful that he was so thoughtful and responsible to my brother and I.
However, the ICU resident put my brother in a tug of war with the pallative care team with regards to taking my Dad off of the ventilator (as was indicated in Dad's living will). This was awful for my brother, so I think training needs to be improved with the young eager medical staff.
I had the privilege of becoming my parents caretaker 12 yrs. ago. I journeyed with both of them to their death. It was their wish to have a natural death without any medical interventions. As my dad's parkinson's disease progressed, hospice was recommended by his medical team and he accepted it. The same for my mom who aged with all the general ailments that resulted in general debilitation until her heart stopped.
It is without a doubt a life lesson that I will not forget - they taught me and my siblings how the life cycle includes death, period. My goal as their caretaker was to afford them a life of integrity and dignity in every aspect of their final years. Death is now a common thread in our lives and we speak freely about it with hopes that we (siblings) have the same afforded us.
As a theology professor, I realized that this was a lesson that was not in the 'books' but rather, one that must be lived. As a Christian (Catholic) my faith insures that we will all be together eventually, however, it does not lessen the grief of their loss.
Your show today is imperative so that conversations are started before the situation arises. I would encourage you to do another show which explores the options available for those who have made their decision and have chosen not to have treatment. I have made that choice and with Final Exit Network I have that choice and it does not include "hoarding pills
I cannot believe anyone would think that starting with a vague, ambigous statement regarding "Do you think about death?" is a good faith effort.
I would think "I want to honor your wishes, after your death, but I have no idea what your wishes are" would be an excellent goal-oriented opening statement.
You have confided, you have started first, and you have set a goal: "What are your wishes?". You have positioned yourself as a servant of their wishes, you have given them the power to control you, and what person turns down the opportunity to tell others what to do?
It makes me very angry that parents don't bring these issues up with their kids first. I don't think parents should wait for kids to agonize about when to mention death and dying. I began speaking to my kids years ago and I regularly bring it up. I'm 65 and in good health but their dad died 17 years ago at 58. I have a will and a final directive and an executor. I urge parents to brings this issue up first, don't put it on your kids.
My mother always said you should go to a funeral of someone you don't know before going to one of someone you do. Good idea.
She also was always open about discussing dying, death, etc. even before she discovered she had only 4 months to 2 years to live. She wrote her own obituary, she planned her own funeral, chose her own casket and even chose the Battle Hymn of the Republic to be the final song played as everyone left the church.
When I had to put down a favorite dog I didn't stay with her. That was the last time I ever let dog or human go gentle into that good night alone. Death is not horrible, it is and always has been part of life.
It seems to me that if I want to get a love one to talk about end of life, I should share my own desire for my end of life. At least, I will be making my own desires known.
If you would please discuss the position of the medical decision maker. i was placed in this position when my father was diagnosed with terminal cancer. My mother was still alive at the time although my parents had divorced by then. Several of my fathers siblings were alive as well as his mother and it put me in a very difficult situation that has had ripple effects ever since. My relationships are now and have been strained since this happened. Please comment on possible ways of letting the family members know that whomever is designated should not have a target placed on their backs for just doing what needs to be done.
thanks
Hello Diane.
I have my advance directives and living will in place. My doctor, hospital and children have copies. I have also arranged to have whole body donation.
I feel it's unresponsible to not have your affairs in order. I am 60 and have 3 adult children. They all know my wishes.
Best,
Rita in Charlottesville Va.
Thank you. I'm in a long-term relationship, and we are in our 50s, a man and woman. He has no living family--parents, siblings nor children.
My SO has a serious heart condition, and will continue to decline--but people live years with this. Informally I believe I'm his proxy--though not legally (and I don't know what that would look like): My name is listed as next of kin on all of his forms, his doctors know my hame and the cardiologist has met me. However, I feel uncomfortable with this sort of unknown... Could you comment on these sorts of situations--any where from dealing with hospitals and talking with a 59-yo man who doesn't want to deal with. Thanks.
I cared for my Dad thru the end of his life, and thought I was clear on what his wishes were. Simply put, he did not want to be kept alive by a machine. When Dad was in the ER, and struggling in his last days, he changed his mind about this, telling me to have 'them' do what they could, because he would miss us all too much. At that point he had suffered two massive strokes, and i am quite sure that he was not the same man who had spelled out the guidelines to me years before. And now as I write my daughter in laws Dad has just done the same thing with his family, reversing what seemed to be his wishes on end of life decisions. In his case, he is slowly asphyxiating due to a lung condition and is not always coherent or lucid. And so it seems that while it is very important to talk about end of life issues,we should realize that things may change before they reach the end. Then you must rely on your heart, your conscience, and your conviction to do what is best for them.
I am 61 years old and want to pre-pay for my cremation but am concerned about moving away from my present locale...is there a national society that has reciprosity between states, or if i pre-pay, do I lose my money (or have to get shipped back here)?
I think many of us would like to take care of these things for our children, but today's society doesn't necessarily mean you will be staying at "the old homestead"...
There are more people than you think "hoarding pills" such as prescription sleeping and pain pills. However, isn't it a problem if those pills are more than a couple of years old? The effort could be "botched" if they are too long expired - isn't that true?
Everyone has lost family members yet not all are aware of what the survivors went through. An easy way to broach the topic is talking about another family member's struggles, funeral costs, etc. and then asking "what do you want?" Humor helps also. I asked my own mother what she wanted for a funeral and when she responded "I don't care" I stated "then it's okay if we just have you stuffed and put you on the front porch?" She laughed and began stating her wishes.
Bravo, Christy, I'm 62 and totally agree; feel so strongly about what you are saying. People don't talk about dying even though we all get it! I have a 91 year old best friend and she says, "Everyone's doing it. Why not talk about it?"
For the institutions that try to bully you and try to get you to change your Directives, simply make them pay for ALL the care to prolong the life of your loved one. Bet they pay attention to the Directives then!
I believe this discussion should include the misinformation spread about what became known as death panels, etc during the period leading up to passage of the health care act. I believe our discomfort with the subject might have played a role. This is a great program! I try to listen daily.
Isn't it about being progressive about patient rights—making you the central figure and enabling you to experience dying the way you have experienced life—by being in charge of your own destiny.
Dear Diane
My father died 5 years ago at 58 years old from lung cancer and spend his last month in his brother's home under the care of his siblings. The situation became very difficult not only because he didn't have a Will nor did he talk about dying but also because he was an extremely private person. He was a Sargent in the Vietnam war and struggled most of his life with PTSD. So much so that he disappeared for 9 years and neither me nor my siblings knew about his whereabouts. He would call us sparatically to ask how we were doing but conversation were curt and impersonal. Suddenly he was in town to visit, collapsed and was basically bed ridden and on oxygen before he finally died a month later. He hoarded his retirement in his clothes in the closet and even slept on his wallet and cell phone until he could no longer move on his own. Luckily there was enough cash found to pay for funeral costs, which we, his children he seldom spoke to or supported financially or spiritually, were deemed responsible for organizing. It was a really difficult time emotionally for me and my siblings trying to understand what we felt for our father who was disappeared and mentally unstable for most of his life. In the end we were responsible for everything from organizing a Pastor to speak at the funeral to the writing on the grave stone. It was for me a very displacing experience and I still feel very bitter towards my father's side of the family for not being more sympathetic to our needs. I find it even difficult now to look and talk to them at all. I wish there would have been an open conversation about his death. On top of that his family strongly believed in miracles and said everyday that God may save him.
I had a pharmacy studentwith me at work and I pulled up a patient's profile on the computer, sorted his prescriptions in chronological order, and descibed what I saw: in April, typical middle aged man with low to moderate doses of blood pressure and cholesterol medications. Then there was a trip to a walk-in clinic that resulted in meds used for typical lower respitory infections and mild narcotic cough medicine. A few weeks later, a primary care doctor visit resulting in a different antibiotic and stronger narcotic cough syrup. That cycle was repeated, and by August steroids, anti-anxiety meds, and narcotics are all he takes and they are all given by gastric tube. Without seeing his chemo treatment, i told the student it was likely he had lung cancer or a cancer that had spread to his lungs.
My point to the student; this relatively healthy man thought he had a cough around Easter and he will probably be dead before Labor Day. I can't stop thinking about this patient, how hard it would be for him to make decisions in this short amount of time. And yet so many have less time....thanks for doing this show.
There's a book called "The Better End" which is exactly about this topic. Written by a doctor and politician named Dan Morhaim, it tells fascinating stories while also giving exact info about how to complete an advance directive. It's been endorsed by many great people, from Maya Angelou to the Dean of Johns Hopkins School of Public Health.
Check it out: www.thebetterend.com
Twenty years after my medical internship I'm still bothered by issues regarding "death with dignity", and futile medicine. To this date I am yet to see a user friendly and all encompassing Advanced Directives form better than the one I created for myself ... because one set of instructions can not apply to all clinical circumstances. I wonder if any of your guests would be willing to entertain my ideas that are beyond the scope of this email?
Related issue: If Advanced Directives were required by law, as with car insurance, this would alleviate millions, if not billions, of dollars in futile end-of-life medicine that demeans the dignity of the dying. I'm not talking about rationing health care, just avoiding the extreme measures that an individual may not have wanted were they lucid enough to make that decision.
Jonathan McMullen MD
Mooresville NC