Dollars & Health: Living wills, death panels and my dad
Filed under: Insurance, Health, Relationships, Retirement advice
When I arrived at the hospital, my father lay unconscious in the intensive care unit. A staff member was able to waken him. He opened his eyes and, recognizing me, moved his hand toward mine. Then he quickly lapsed back into an unconscious state.
My father was 88 and had multiple health problems: emphysema, chronic obstructive pulmonary disease, and now, a second bout with pancreatitis, which had sent him again to a hospital. Years of tobacco and alcohol use had caught up with him, yet he had survived a stroke years before and was still living at home, by himself, and had no terminal diseases.
My brothers and I thought our father had a living will, but a call to his lawyer proved otherwise. So while he lay unresponsive, hooked up with an array of tubes, we discussed what he would want in medical care.
In other words, we became a family ''death panel'' of sorts. But not a government bureaucracy rationing health care to the sick and disabled, as envisioned by opponents of health care reform. The proposed legislation would pay doctors if a patient wanted to discuss end-of-life care, including a living will and hospice. It would be a voluntary consultation.
Still, the health reform debate has focused on the intractable problem of skyrocketing medical costs. And the last year of life consumes a large chunk of health care spending: The 5% of Medicare patients who die each year account for about 30% of the program's expenditures.
A recent study, however, found that terminally ill cancer patients who discussed end-of-life treatments with their doctors had less money spent on their care with no difference in survival, and died more comfortably than those who received aggressive care.
My father had given one of my brothers the medical power of attorney to make decisions on his behalf. On a couple of occasions, dad had mentioned that he did not want to be in a vegetative state as his mother had been for years, in a South Carolina nursing home. We also knew he had wanted to live, and was trying to walk without assistance when he was hospitalized.A document spelling out what our dad wanted in medical care, though, would have made our decision-making a little easier.
A living will expresses your preferences on what you consider acceptable treatment, such as tube feeding and ventilator care, if you're unable to make decisions for yourself. A medical power of attorney designates a person to make decisions for you if you're incapacitated, as my father was.
Taken together, they are components of an advance directive.
"It's very important for families to have these conversations on what they want,'' said Sally Hurme, a senior project manager at AARP, and also an elder-law attorney. "These conversations are more important than the legal document. Knowing what their values are, what their preferences are, makes the surrogate's decision so much easier. ''
And it's better to do this long before you're on the way to the hospital, she adds.
Laurie Jacobs, a geriatrician at Montefiore Medical Center in New York, said, "Patients who have early dementia, their prognosis may be quite long, but the window of opportunity when they can do this is not that long.''
Each religion has guidelines, Jacobs said. "People who are religious seem to grasp these issues better.''
In choosing a health care proxy or power of attorney, Jacobs advises people to choose someone who can navigate the health care maze.
A living will can't cover every possible situation. Generally, it addresses your wishes on areas such as ventilator care, resuscitation, nutrition or hydration, You may want to involve your family, a religious adviser, and a doctor in deciding what you want.
You can change an advance directive at any time, or cancel it. And if you can answer medical questions yourself, and are competent, your spoken wishes on medical care trump any written instructions. The provider will follow the patient's wishes, Hurme said.
My father never fully regained consciousness. We followed the medical team's suggestions along the way, first to wean him off medications. But the ventilator was a different story. He didn't appear able to come off it.My brothers and I had differing opinions on his care through a week in ICU, but eventually reached a consensus. It didn't come easy.
With his condition deteriorating, my brother with the power of attorney consulted with the doctors. They felt removing the ventilator was the only way he could work his way back to a normal life, and avoid an unresponsive existence in a nursing home. So the ventilator care was halted.
Dad was able to breathe on his own for a few hours, but then passed away.
His hospital experience, in obvious ways, made an impression. I came home determined to have these end-of-life discussions with my own family.
As Hurme said, everyone over 18 should have a conversation about emergency medical scenarios.
An advance directive ''can give us peace of mind, and peace of mind for caregivers who may have to make decisions for us,'' said Kathy Brandt of the National Hospice and Palliative Care Organization. "At the very least, you should name a health care power of attorney.''
Only about 25% of Americans have completed an advance directive, Brandt said.
While an attorney can be helpful, you can fill out the advance directive paperwork without one.
Note that different states have different laws. State-specific forms can be obtained from a hospice organization, a hospital, or state aging office. The National Hospice and Palliative Care Organization offers free forms at http://www.caringinfo.org/.
Reader Comments (Page 1 of 5)
10-12-2009 @ 6:25AM
David S. said...
Thank you Mr. Miller for sharing your personal story with us. Sooner or later we all have to face these issues with our parents. I faced it with my father two years ago. He had terminal cancer, though, and as much as it pains me to say this, decisions are somewhat easier because the end will eventually come. Decisions are much tougher with loved ones who are elderly (nor not) and have chronic health issues that aren't terminal in nature. That is why living wills are so important, that the person write down their explicit wishes how they want their medical care handled. I don't necessarily agree with the provision in the health care bill about doctors getting reimbursed to discuss end of life care, but let's get real: we all (family members or patients) have these discussions with doctors all the time. When a family member is quite ill, doctors and nurses become your lifeline.
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10-12-2009 @ 4:11PM
HisWife said...
THIS GUY IS A PLANT, THE VERY FIRST RESPONSE IS SO CALMING, SO MISLEADING. D E A T H ADVISORS/PANEL/DICTATE IS REAL. If you have an illness and could live on if you could have certain treatments and/or procedures and/or surgeries and you are being denied, you have been killed by your gov't , and they are cold, godless, demonic, forces in our lives. ESPECIALLY WHEN IT COMES TO THE BOTTOM LINE.
10-12-2009 @ 6:54AM
cindy said...
my mother did not have a living will, but when she became terminal with brain cancer the Dr. discussed hospice with her with us in attendence. but.wht was not discussed was her buriel plans were ,that was a very hard subject to bring up, so even though a living will is a excellent idea please discuss funeral arrangements.
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10-12-2009 @ 7:26AM
Tammy RN said...
It is not the place of the MD who is coordinating care to bring up funeral arrangements, they have enough to do and it is not their place....in fact, I could see most families taking it very badly if one were to do so. That is best discussed in your faith community / family / friends.
The best way we could prepare for such things is to quit treating death as a taboo topic and openly discuss what we want and even plan for it before we need it.
10-12-2009 @ 1:56PM
chuck said...
cindy...you are so right. Although I have had an advanced directive in place for years I have only recently laid out my funeral arrangements on paper. Great post!!!
10-12-2009 @ 7:04AM
Tammy RN said...
I am ashamed that my fellow conservatives turned an effort of assisting people to create advance directives into the propaganda of "death panels"...noone is TELLING you what to do, its just the opposite...you are requested to tell others in advance what you want or else you will be treated in the most aggressive manner available and that may not be what you want.
And its true, we need to talk to teens and young adults about what types of intervention they would want...would they want to be an organ donor? As a critical care nurse, I started those conversations with my sons at about 15.
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10-12-2009 @ 10:46AM
osborne said...
My sister died of ovarian cancer and yes, there are DEATH PANELS....they may not have "that name" but they came to my sisters room (in spite of good health insurance) to tell her husband and family....it was TIME to put her on hospice...her doctor didn't agree at the first 5 times. Her physician saw some "figtht" and length to her life! But the hospital kept sending representatives of the hospital to move her on to Hospice as she would eventually die....LIKE WE ALL ARE GOING TO DO SOME DAY. Let her go they in a peaceful way they insisted and yet when we came to visit her she smiled...she giggled, and she kissed us (my sister). So to me...to her husband...she was LIVING still....NOT dying YET! SO IF WE THINK THERE ARE DEATH PANELS OF OLDER PEOPLE (MY SISTER WAS 63)....THERE WILL BE EVEN MORE OF THEM WITH OBAMA'S HEALTH CARE! Don't kid yourself...there are DEATH PANELS....now...and there willl be more in the future telling us to "pull the plug" and let them go...when they are ready to go...and NEITHER is GOD ALMIGHTY ready for them to go!
10-12-2009 @ 10:57AM
LaurieRN said...
Thank you, Tammy. Well said. I am also an RN. I am in senior home care (non profit). Most of the time the job is heart-warming. Increasingly, what I see on a daily basis is heartbreaking as we can't afford to do even the basics that are needed either because the funding is too low, their incomes too high or the people making the decisions have no idea what is needed and that we aren't babysitters; we are health professionals. We have cut expenses (including our wages) to the bare minimum and still can't help all who need it. What I have found many times in my experiences is that those who can least afford it are the most thankful and supportive. Those who are/were "above income" including many political decision-makers expect the most for free, demand, criticize and care little about those who actually NEED what limited resources we have. We have NOT experienced the "entitlement" mentality from the poor or working poor.
10-12-2009 @ 11:09AM
undrgrndgirl said...
@#5 - i'm sorry for your loss...but hospice is not a "death panel" - hospice is for those whose prognosis is terminal (usually those expected to die within 6 months) whether there is "fight" left in the patient or not...hospice does not kill people, it makes their last days, weeks, months more comfortable...unfortunately ovarian cancer IS a death sentence; few survive beyond 5 years...
10-12-2009 @ 1:17PM
Truthfully said...
Interesting that you would leave your own 15 yr old to decide where his "organs" will or won't go when he's STILL a "child." What's more, I think it's absolutely disgusting of you to be bringing up the subject of your own 15 yr old's possible DEATH to him when he should only be looking to his FUTURE! What kind of mother are you?? Can you not decide for your own children, and why are you thinking negatively about your own son's life?? I think it's time for you to get out of the "Critical Care Unit", my dear. It's so obviously messing with your emotions as well as your mind.
10-12-2009 @ 2:30PM
Kate said...
Every Thanksgiving I used to bring this topic up with our children. An open discussion with pros and cons and when they went to get their license was another time to broach the subject. Organ donors are desperately needed and there is no getting around how many teens leave us too soon whether from accidents or while waiting for an organ. Put yourself in either situation and you may be more accepting of an open discussion.
10-12-2009 @ 7:32AM
C.B. said...
It was completely irresponsible to shoehorn the phrase "death panel" into the headline and into the story, given limited attention spans and heightened rhetoric. End-of-life and palliative care decisions take place literally every day, and far away from such public scrutiny, and you are distracting from the serious issue at hand to employ a catchphrase of the hysteria of the summer of 2009. Shame on you.
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10-12-2009 @ 8:00AM
Richard said...
What a GREAT and HELPFUL article!!!!! Take it from a son who lost his hero, mentor, best friend, UNC-Chapel Hill graduate, Navy Lt. WW II, businessman, golfer, hunter, fisherman Daddy in November 2008 at age 92. Read and heed! He used to say that to ME! Cheers!
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10-12-2009 @ 8:18AM
elitistpuke said...
This story is so much Propaganda BullS??t,... The Health Care Industry and Insurance Company Corporate Elites have their Useful idiots croon for ObamaCare as Propaganda -- http://www.youtube.com/watch?v=psEYot5Xot4&feature=player_embedded
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10-12-2009 @ 8:23AM
J.M. said...
What a poignantly phrased article. The author highlights the exact problem with denying citizens health care reform on the grounds that it will lead to rationing of care to the elderly and terminally ill. In my family it is unheard of to send grandpa or grandma to a rest home for the sake of our own convenience. It has commonly fallen upon our shoulders after a loved one has fallen deeply into illness to make the choice whether or not to 'pull the plug'. It is never an easy decision but necessary, still. Kudos, Mr. Miller, for sharing your story.
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10-12-2009 @ 8:24AM
jerri said...
Mr. Miller, thank you for sharing youre story about your father. I am a 39 year old widow with two young children. My husband of 10 years died of a heart attack 2 years ago. We had casually spoken once or twice about our wishes just in case something similar to your Fathers condition were to happen to either of us. What we did not speak of, is what we would do if one of us just simply did not make it home one day. So, this was the case with me and my children.He was here one day, gone the next. Not knowing where his life insurance papers were, not knowing the pin numbers to anything, I was completely confused on what to do and where to start. I finally found his life insurance contract and he died 3 days before it took affect. I try to express to my friends who are married how important it is to talk to eachother. Let them know exactly how you do things, where items and paperwork are kept. This is a very difficult thing to do when you are in the middle of losing youre spouse, and having to worry about where the address is to mail your house payment. I know it is difficult to think that this could happen to you, which is why we did not make these plans. We were young, having a great time and had everything we needed in life. So my advise to all those that are out there that have not had this conversation with a loved one, please take a few minutes and have this talk. You never know what can happen. Mr. Miller, Im sorry for youre loss and best wishes to you and youre family.
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10-12-2009 @ 8:35AM
drmom said...
Thank you so much. As a physician, I cannot begin to tell you how frustrating all these ridiculous lies and scare tactics about death panels have been. Every physician knows the importance of these discussions. There is nothing sadder than running a full code on a fragile elderly patient whose ribs crack with chest compressions. When people's wishes are not known, sadly, they receive expensive aggressive care even in hopeless situations. The grieving family is left with doubt, guilt and massive bills. Everyone should discuss this with family and doctor and have their wishes documented.
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10-12-2009 @ 8:37AM
S321Saint said...
Obviously a liberal wrote the story. The "death panel" idea came from a legitamite concern. When the quality of your health care is pro rated based on how old you are, how close to death you are, then it becomes, in effect, a death panel. Its happening currently in the UK and Canada. Older people , already having had a myraid of illnesses, is told by a panel of medical administrators that another operation or treatment is "too expensive" for the plan. So you tell me..a "panel of medical people" decide whether someone can have the treatment they need to survive. Unlike what the liberal mantra is about on this issue, having the plan cover discussions about end of life care is great and should be part of it. But the obamities linked the "death panel" idea to the wrong portion of the debate.
What i find most distressing is that given what is happening with socialized medicine in the UK and Canada, you'd think most people would run screaming from trying to do the same with the US. Maybe a windfall profits tax on lawyers....and a cap on THEIR earnings...only a percentage of what the person WINNING the case gets..no more.. Just like what they are doing to the CEOs of companies.. Oh and give the President the right to fire heads of law firms...like they do to other company CEOs.
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10-12-2009 @ 10:46AM
David S. said...
Uh, hate to break it to you, S321, private insurance companies deny claims all the time, sometimes based on age. My 82 year old aunt was denied a knee replacement by her insurer. Yes, Medicare would pay the 80%, but she was still on the hook for thousands of dollars for the other 20% her private insurer SHOULD have paid, but refused. And she was in pain from her knee, not like she wanted the replacement for kicks. You apparently believe private insurance companies actually care about you. They have one goal: to keep costs low and maximize profits. If you believe otherwise then you believe in the tooth fairy and Easter Bunny too.
10-12-2009 @ 10:50AM
Sarasmom said...
When our daughter passed away two years ago from a long battle with a genetic terminal disease, these issues were forced on us by the insurance companies who felt they had already paid enough to keep a 21 year old alive. It was the insurance company that wanted her taken off all nourishment and just let to die. It was NOT the doctors or the government. We fought the insurance companies wishes and let God take her when he was ready. This is not something that I have read about. It is something that I have lived. When my father was dying, the doctors talked to us about what he would want. We didn't see that as a death panel, we saw it as reality.