The true cost of end-of-life care

You’ll never pay your biggest medical bill.

Why? Not because you’re a deadbeat, but rather because you’ll be dead.

End-of-life care (EOLC) can be incredibly expensive. Let’s look at some of the reasons, and then have a discussion of choices we all need to consider for ourselves and our loved ones before it’s too late.

The true cost of end-of-life care

End-of-Life care is hugely expensive (see below), but it doesn’t have to be tremendously costly. What drives the cost of EOLC to the extreme? Choices made by the patient, family and sometimes doctors, can produce huge costs.

What are the costs and what are the choices? Often they have to do with how aggressive treatment is as a patient approaches death. Some patients and families want “everything done” even when the patient is near the end of a terminal illness. Sometimes, even the most advanced and aggressive treatment will, at best, only add a few weeks or months to the patient’s life.

Other times, the patient is gradually failing – multiple organ systems are disease-ridden and gradually becoming non-functional: heart, kidneys, liver, lungs, brain – and there just aren’t any treatments that can be done successfully in the face of this decline.

Or the patient may experience a sudden, catastrophic event from which recovery is almost impossible.

How these patients choose to be treated can substantially affect the final cost, how the patient spends his final days and how much your family itself has to suffer during your final days.

DNR via Shutterstock

DNR via Shutterstock

The monetary costs of end-of-life care

First, some estimated costs:

• About one-quarter of all Medicare payments are for EOLC paid out during the last year of life. That’s estimated to be about $50 billion per year. The majority of that $50 billion is paid out for the final two months of these patients’ lives.

• It’s not unheard of for EOLC to cause the patient to use up much or all of his savings for copays and non-covered expenses during his final months.

• Average cost for a stay of one year in a US nursing home – about $75,000. That doesn’t necessarily include things like physical or occupational therapy, transport of the patient to a local hospital emergency room if required, special medications, etc. Taking care of a patient in his home, depending on level of care needed, may be equally as expensive or even more so (though it depends – I know of some families who say it was cheaper to hire a full-time nurse at home than to house a relative in a nursing home).

• The “average” cost of EOLC per patient is about $30,000.

• Some drugs, used as “last ditch” treatments to possibly buy the patient a few more weeks of life, may cost from $50,000 to $100,000 per patient.

• Trips from home (or nursing home) to ER and then admission to the hospital and possibly to ICU can be incredibly expensive. I recently found out that, in my area, the minimum charge for transport to an ER via helicopter is $10,000. While few EOLC patients will need helicopter transportation, ambulance charges are also expensive.)

But this isn’t just about the monetary cost of end-of-life care. It’s also about the patient’s (and the family’s) quality of life during this stressful period.

The human cost of end-of-life care

Here’s one case that illustrates the decisions that must be made, and the costs that can occur, both financial and emotional.

A woman in  her mid-70s had an abdominal malignancy that was treated with surgery, radiation and one round of chemotherapy. The type of tumor was very malignant, and chances were high that it had already spread elsewhere. We explained to the patient and her family that the chances that the tumor would recur were high and that, should it recur, her chances of survival would be very low.

The tumor recurred and another round of chemo was begun. There was minimal improvement and tumor was found to have spread to three other major organ systems. We explained at this point that her chances for survival were almost nil. But she wanted more chemotherapy. We were hesitant, as she had become more debilitated and needed someone to stay with her around the clock in her home. We mentioned that hospice might be something to consider. She rejected that, as she believed that would be “giving up.”

So we admitted her to the hospital for another round of chemo. On the third day of chemo, her condition was clearly much worse. We tried to convince her and her family that they might consider withholding additional chemotherapy. She refused. Chemotherapy was continued. A few days later, the nurses found her unresponsive. CPR was started and she went to ICU. She was placed on a ventilator and was comatose. She still had some brain stem activity but she was essentially in a vegetative state. We asked the family to make her a “no code” – meaning, at the request of the family we would not attempt to resuscitate the patient in case of cardiac or respiratory failure – but they refused, saying that the patient refused to give up and they wouldn’t give up, either.

Over the next 10 days, the patient had cardiac arrest at least three more times. The last time the resuscitation was unsuccessful and she died.

I can’t tell you what the cost to this patient, her family and Medicare was in dollars. I can say that chemotherapy drugs are very expensive. As was her hospital and ICU stay. The imaging studies that we did, the ventilatory support, the drugs given in ICU to maintain her, and the drugs given during her many codes. But, as a guess, I’d estimate that her final three weeks cost at least $100,000. Plus what she and her family had spent on home care for her in the two months before she came into the hospital. I can tell you that the family was emotionally distraught for the weeks that this woman was in ICU and experiencing repeated codes, unresponsive on the ventilator.

What other options did she have?  Here are a few.

1. Hospice care, either at her home or at an inpatient hospice, would have been one option.

2. Not electing additional chemotherapy.

3. Choosing to not have her life prolonged by extraordinary means – no CPR (or Do Not Resuscitate [DNR]), no medications to help maintain her blood pressure, no ventilatory support. She could have chosen the “care and comfort” option. She would have been given adequate pain medication and other medications to maximize her level of comfort. If she suddenly got worse, she wouldn’t be rushed to ICU and treated extensively. She would have been given enough medications to keep her pain-free and relaxed. She would not have had to go through CPR and her family wouldn’t have witnessed her, virtually lifeless in ICU, for an extended period of time. The choices she made didn’t prolong her life, they prolonged her death. When I’ve thought of this lady and her choices, I’ve wondered if she knew how this scenario would have played out for her, if she would have made a different choice.

A word about CPR: I was explaining to our editor, John Aravosis, recently that most people think CPR is what you see on television.  It’s not.  At least not entirely.  What you don’t see is the damage CPR itself can do to the patient.  A recent study showed that one in three patients undergoing CPR suffer from broken ribs as a result – that’s the average, in the case of women it was nearly 1 in 2.  And the elderly are even more prone to bone breakage.  Those broken ribs can, in some cases, puncture a lung or puncture the heart.  But at the very least, you could end up with a terminally ill patient in ICU who, in addition to all their other problems, now has broken ribs, in addition to potentially suffering brain damage from hypoxia (lack of oxygen) depending on the length of time they’re not breathing.  A broken rib, and even a punctured lung, is a small price to pay for an otherwise healthy person to be given another lease on life.  But when the patient is terminal, and in a vegetative state, is this really the best course of action?

And in addition to the pain and suffering of the patient, the family got to witness this, repeatedly.

Unfortunately, the above case, and thousands more similar to it, happen every day.

How can you prevent having something like this happen to you?

Make your end-of-life care decisions in advance.

Get input from friends, family, spouses, others who have already made EOLC decisions, your pastor and other people in your life. You might be surprised at the input that you’ll get from these people.

Decide what you want to have done, and be extremely clear about it. I’ve seen people who have medical directives that say things like this: I want to be resuscitated if there is a reasonable chance that I can return to a productive life. Or this: If there is absolutely no hope that I can be successfully be resuscitated, don’t resuscitate me. What is a “reasonable chance”? What is a “productive life”? How does someone know in advance whether or not a resuscitation will be successful?

Before you enter the realm of making EOLC decisions I’d suggest taking a look at the following. They can give you some good advice and some tips on what to do and how to do it.

Help Guide
NIH Advance Directives
Advance directives
End-of-life decisions

You can also talk with your local hospital. Often the Patient Advocate’s office (or a similar agency at your hospital) has handouts and information that is useful. Or you can also consult an attorney who has expertise in this area.

What can you do to make sure that your wishes are known?

Whether you want nothing at all done for resuscitation, or you want just to be kept comfortable, or you want everything possible done, make sure that everyone in your family knows exactly what your wishes are.

Write them out, clearly and succinctly and carry them in your wallet, purse, fanny pack or wherever. (Some physicians, nurses and others have gone as far as having a “DNR (Do Not Resuscitate) tattoo” placed conspicuously on their chests. While this is not legally binding, it does alert both your family and caregivers that you may be very serious about not getting CPR. Even though they would probably resuscitate in the absence of a signed document, it may make them try to verify with the next-of-kin what the victim’s wishes are. There are more warnings about this procedure here.)

Make sure that your doctors, all of them, have copies and discuss your wishes with each doctor in person. That way, they will have a copy of your document and also will note your directives in their chart along with your other information.

Also, make sure that your next of kin and/or designated power of attorney know what your wishes are regarding resuscitation and have signed copies of your directives.

In addition to the paper trail, there are thumb drives available that not only store all of your medical information (diseases, medications, allergies, etc.), but also store your wishes regarding organ donation, EOLC and more. They are pre-formatted so you can fill in the blanks with your demographics, medical information, EOLC and other information. These can be very handy when carried on your keyring, worn on a bracelet or worn on a lanyard around the neck. Some will clip to your wallet and one is shaped like a credit card for easy carrying. A Google search for “medical record thumb drive,” “Medical alert USB drive,” or similar will give you a number of sites to choose from. Depending on the supplier, these can cost from about $20-$50, and can have several gigs of storage, medical records software, anti-virus software and may have other features. These can be good sources of information if you are unable to communicate your EOLC, and your medical history in an emergency. Or if you simply have trouble remembering your medical history, medications, allergies, vaccinations and other medical data.

None of these ideas is absolutely foolproof, but the more redundancy you have, the better your chances of having your wishes followed.  And at the very least, your family, in your stead, will have some sense of your wishes to guide them if you’re unable to make the decision for yourself.

An important point: Make EOLC decisions now does not prevent you from changing your mind in the future. Don’t postpone making these decisions too long. I’ve seen patients do this and then, in a sudden emergency, no one is prepared to make a decision. Keep a record of everyone you’ve given copies of your EOLC information. If you make a change in what you want done, make sure that everyone gets a new copy of your directives.

Don’t postpone making these decisions too long. I’ve seen patients do this and then, in a sudden emergency, no one knows what the patient’s wishes are, and no one is comfortable making a decision that might end the patient’s life (or at least not prolong it unreasonably).

Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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25 Responses to “The true cost of end-of-life care”

  1. Mark_in_MN says:

    Several points (not corresponding to your numbered points above):

    1) It seems that you’ve missed my point. No sentence in your reply makes that clearer than “When cardiac arrest occurs, treatment needs to be started immediately.” I completely understand that delays in starting CPR lead to death or to severe consequences if the patient is resuscitated. The question is, rather, why should standard medical procedure regard treatment for cardiac arrest as needing to occur in all cases. Certainly it makes sense in most cases where a twenty-something is brought into the ER after an accident and has a cardiac arrest. It would generally make sense in the case a 50 year old who had a cardiac arrest while in the hospital having an angioplasty and stents put in. But it may not make sense in the case of a 84-year-old with terminal cancer who has taken a decided downward spiral in recent days, or the 92-year-old patient with congestive heart failure. If medical professionals can so frequently use cases like that to argue about how important it is to have advance directives, because such treatment is often to little effect, expensive, and even brings its own additional dangers, why are not those same medical professionals calling for discussions about what the standard approach to such patients should be? Instead of saying to people, you need to force us not do these horrible things, why isn’t the medical profession talking about reforming their standards of care, their ethics rules, and the law? I know that won’t be easy, and in the mean time the advance directive might be necessary, but no one is calling for such a discussion about medical practice. At least no one is calling for it any any serious and public way like they do with making people aware of advanced directives.

    2) I was’t suggesting that when cardiac arrest occurs that physicians and others should first seek out family to give a nod to CPR. I’m suggesting that standard practice should include situations where CPR wouldn’t be initiated unless the family specifies that it should be done in advance, kind of the opposite of today’s DNR. The elderly woman with terminal cancer might be just such a circumstance. In the case you used in your post, the family might well have decided that CPR should be done if needed. But the change in the question might also do good in terms of carefully thinking about it, rather than quickly saying “no.” Asking for a DNR implies that you’re asking for an exception to standard care that is normally a good thing. They might wonder, even unspoken and in the back of their mind, if it doesn’t amount to killing their loved one. The other way around might mean that the question is more about letting their family member die when they die.

    3) The threat of lawsuits needs to be curtailed. It distorts medicine and makes it as much about law as it is about sound medical judgement and humane care for another human being. The Republican thing for tort reform as a means of lowering costs is just silly. (I think there are really other motives behind this hobby horse of theirs.) But I do think that there needs to be significant reform here. Legal action over malpractice or medical care given should be very rare. A medical decision to do or not to do CPR probably shouldn’t be subject to litigation. A substantial burden to show evidence of real wrongdoing should be placed on those who would suit over medical issues before the suit can be accepted by the courts. Physicians and medical facilities should be able to make medical decisions without consulting lawyers, and the law should back them up on that.

    4) Death in inevitable. Sometimes we simply need to let it happen. We seem, both our culture generally and in the medical and legal professions, to have a great deal of difficulty coming to grips with death.

    5) The failure of bioethicists here is that they are people whose discipline and work is attached to considering the ethics and ethical dimensions of life, medical care, and so on. They certainly talk about end of life care, but I’ve not heard bioethicists really raise the question of whose burden it is to stop intrusive, burdensome care at the end of life. By and large, when we hear from them, it seems they also approach it with the assumption that it is on the patient and their family to stop this, not the medical profession to reevaluate the standards of care as we approach the end of life. For bioethicists, more than anyone, that’s a huge failure.

    6) You suggest that many patients say, when asked about having advanced directives and appointing decision makers that “No I don’t and I don’t want to do the paperwork or appoint a DPOA.” I don’t doubt that. Indeed, I’m reluctant to create advance directives myself (see my ethical objections to them in another comment), and have not appointed a health agent. One of the problems is that creating the paperwork is somewhat of a bother. In Minnesota, I’d have to find a notary (a useless thing in the first place, but I’d have to find one never-the-less) or two witness who are not designated agents or alternatives (who would be exactly the people I’d also feel comfortable making my witnesses). I should be able to simply verbally communicate who my health care agent should be to my primary physician for inclusion in the clinic’s records or to a physician, nurse, or clerk in admissions at a hospital and have every legal force the signed written document has. If we did that, there would be far more people with designated decision makers when they were needed.

  2. karmanot says:

    Looking forward to it!

  3. lilyannerose says:

    Our culture damned near demands that death be cheated at all costs and I think it’s awful. My father had advanced dementia at the age of 80 and instead of letting him go when he had a reaction to a blood thinner the young doctors had themselves a “miracle.” Well that miracle saw my father confined at home to a hospital bed for a little over a year and in need of expensive drugs and round the clock nursing. The quality of his life was zero. Once he was placed on in home hospice we were told that no steps had to be taken to prolong his life. Yet time after time doctors wrote out prescriptions for meds to keep him going longer. How do you have a plan in place that states no life saving steps to be taken and then have doctors writing prescriptions to just do that and how do you expect a family to withhold these medications and have a burden of guilt placed on them if they refuse to administer the meds? The whole system in short just Sucks! If you ask me it was his excellent medical insurance policy that was at the heart of some of the decisions made for him by the doctors. Don’t even get me started on that ass of a Resident Doc who thought that one of my father’s hospitalizations was so that the family could “dump” him. He caused no end of stress as the family was given 72-hours to find a home for our father. The plan was always that my father could die at home and that little jerk didn’t once ask any questions he simply assumed. Once again the system just really Sucks.

  4. docsterx says:

    A few thoughts for the “autopilot” kicking in.

    1. If CPR ISN’T started in a timely fashion, the outcome is very often death, a persistent vegetative state, some degree of severe disability. When cardiac arrest occurs, treatment needs to be started immediately. Another example of autopilot would be someone with a clear intent to harm himself and/or others. Or when a family is refusing needed medical treatment for a chils due to religious beliefs. Or when physical abuse is occurring. Autopilot kicks in as a safety measure to prevent death or grave injury, regardless of the patients’ or relatives’ requests in these matters. While this may not always take into the wishes of those involved, thereby becoming paternalistic, it’s been demonstrated that these actions need to be taken to prevent harm, death, disability or other detrimental outcomes. In other cases, where a patient might need surgery, or a new medicine needs to be started and there is suitable time for discussion, the autopilot doesn’t kick in. Because there is time to discuss options and the outcome is not always a fatal or near-fatal one. Sometimes I’ve been the only physician at the code and started the code simply because there were no advance directives in place. I’ve run and participated in literally thousands of codes. The code/nocode decision has to be made instantaneously. If a valid DNR order is found after the code has started, the code can be stopped. In a cardiac arrest without CPR, there is no second chance and no time for Monday morning quarterbacking. Additionally, doctors, nurses, paramedics, EMTs, respiratory therapists are trained to resuscitate. It is very difficult to stand at a patient’s bedside and watch him die without trying to do something to prolong his life. In CPR cases the presumption is that most people want to live. In the absence of a valid, legal document stating the contrary, CPR gets done. If the patient (or family if the patient isn’t mentally competent) does not want life-saving measures, they need to clarify it.

    2. CPR often occurs in a vacuum. There is the dead patient, with no medical history, no apparent advance directives and no time to find anyone who knows what the patient’s wishes are or to search for legal documentation. In those cases, CPR gets started as the lesser of two evils. The option is leaving the dead patient just that way, dead, and doing nothing. Dead is irrevocable. I’ve participated in codes on sidewalks and at poolside. The same rules apply. Resuscitate unless there is clear evidence that the patient does not want to be resuscitated. No second chances. I helped pull a man who had drowned out of a pool. He was not breathing and pulseless. I started resuscitation immediately. I couldn’t ask him what he wanted. He had no documents on his person to direct me. Apparently no relatives around. He was resuscitated successfully with no neurological consequences. When the patient can’t make decisions, or has made a decision but has not been able to successfully transmit it, resuscitation occurs.

    3. When a patient dies, if family is present, they often have no idea what to do – what the patient wants, what they want. Some family members may want a full go. Others may not. Again, since there is no second chance, the code gets started while the family thrashes it out or until the next-of-kin makes a decision. I’ve been in patients’ rooms in CCU, talking with the patient and some family members and the patient -died. After 2 seconds of shock, CPR got started as one of the nurses ushered the family out and explained what was happening. A few minutes later, the nurse came back and said that the family wanted everything done. Had I waited those few minutes before initializing the code, the patient might have died or been a vegetable.

    4. Some Americans are very willing to sue. Sometimes CPR is mandated based on threats made by family members. “If you don’t bring grandma back, I’ll sue you and everyone here.” There is always the specter that the family will take legal action whether CPR is done or not done. Sometimes some family members oppose the decision of other family members. This unhappy minority can decide to sue. So sometimes there is a whiff of a suit in the air that makes the decision less clear cut.

    5. Death is final and irrevocable. I’ve had family members call me and say, “We really should have let you do CPR. Mom might still be here now.” Others have called and said, “We should never have had CPR done on Aunt Betty. She’s still unconscious and in a nursing home.” No one can be sure of what the outcome of doing CPR will be. We are sure of what the outcome of NOT doing CPR will be. Until we have a means to quickly predict what that outcome will be in a given case, we do the best we can.

    6. Bioethicists are not present at codes. They don’t get a feel for the disorganized organization there. They can read literature, interview families, talk to people on the rapid response team and make some suggestions. But the suggestions are just that, suggestions. They are not binding. Again, when a code happens it happens quickly. The patient and family would have to be familiar with the bioethics guidelines and have made a CPR decision in advance of the code. That rarely happens.

    So, the way things stand today, it is the patient and/or family who needs to make a decision about CPR before the event. Many hospitals ask on admission, “Do you have an advanced directive? Do you have someone who is your power of attorney? Would you like to fill out an advance directive form? Or designate someone as power of attorney?” So the conscious patient and family can address this. But it is a choice. Many say. “No I don’t and I don’t want to do the paperwork or appoint a DPOA.” The decision-making needs to be done by the patient, in a timely fashion.

  5. Mark_in_MN says:

    It occurs to me that there is something oddly missing in many of these sorts of pieces, especially when written by people in the medical profession or bioethicists. They usually proceed as this one does, noting the huge cost of care at the end of life and the degree of pain and suffering that many patients are put through because of medical practice going on autopilot. The remedy, it always turns out is that you, dear patient, need to do something to stop this happening to you. Or that you should talk to your loved ones about making these plans. It is always up to the patient to put on the breaks and re-direct their medical care. While I’m sure that there are many physicians who consider the paths of treatment more carefully than this, this is the direction that these articles often take.

    But there is a big, huge, gaping whole here. Why should it be up to the patient to put a halt to these things in their case? Why do medical professionals need to urge people to put a stop to them so that end of life care doesn’t become a cavalcade of misery and rack up a huge bill? Why isn’t the onus put on the medical profession itself? Instead of “create this directive to keep these terrible things that we’ll do to you from happening” why isn’t the message one directed at the medical community calling for a wide ranging discussion about standards of care and how medicine in general approaches the end of life? Why don’t we more often hear for the medical profession to moderate their approach in these situations so that families might have to ask for more aggressive treatment rather than put the breaks on? Why aren’t we asking why the standard response to a cardiac arrest of a late stage cancer patient, already experiencing significant decline, is indeed CPR? There seems to be a failure here to, especially from medical professionals and bioethicists, to really delve into the real problem and ethical issues around end of life care, rather than putting the whole thing on patients to intervene for themselves.

  6. crazymonkeylady says:

    I’ve worked in a nursing home for 30 years. Many elderly have no relatives and have court-appointed guardians. Guardians almost always require full code status. I have seen countless elderly shipped off to hospitals time and time again, racking up bills. The depth of human suffering is unspeakable, when hospice could have made their transition comfortable. And some families claim god wants them to do everything or it would be murder. This is very sad. And costly.

  7. Mark_in_MN says:

    The modern way of death, in hospitals with machines and many drugs, beeps and pages, is not something I find valuable. Quite the opposite. I think more people should be dying at home or through live in hospice care, and believe that hospice options should be available to everyone. Dying in a familiar setting with family and friends is better than the flurry of activity that can come in other health care settings.

    I like the idea of being able to designate who will make these decisions for you when you cannot make them yourself. (I just wish it could be more informal and less encumbered by legal documents that need to go through an overburdened formalism of being signed, witnessed, and notarized (a process that seems to me rooted in an earlier age no longer suited to the 21st century, if it was ever really served a purpose in any century).

    But the advance directive part is something I struggle with. I know this seems to be a minority view, but I question the ethics of such directives, and the degree to which physicians and family members should be and feel bound by them. In particular, it seems to me that decisions on treatment, even general directions thereof, are very much bound to the particulars of the situation not to generalisms about imagined scenarios. Can a patient really imagine the possible circumstances in which these directions will need to be interpreted, and can they speak appropriately to that situation. I have real and deep doubts about that. Perhaps a patient who is terminally ill and whose life will end in weeks or months may be able to be address those particulars more closely, but most people removed, potentially, by decades or years are not, I believe, in a position to really and competently be able to address these issues, even if they can speak in generalities about what they might and might not want in some vague indeterminate time frame. To put it succinctly, I think that they only ethical way that those decisions can be made is within the particular context and evaluating the particular facts thereof, not in general terms years or even decades in advance.

  8. docsterx says:

    I’ve been thinking of doing a post on euthanasia/physician-assisted suicide. Some information from all sides and, rather than takes sides, just opening it up for people here to discuss it, present their views, fears, ideas, etc.

  9. Palto says:

    Towards the end of my mom’s life I begged her to go to the hospital which would have given her a crappy quality of life with her stage 4 congestive heart failure. All she wanted to do was die peacefully at home where she was. She loved me that much that she agreed to go but in the end my siblings and I didn’t take her. I realized how selfish that was of me wanting her to go back to the hospital that she hated. My siblings and I let her have her wish and she passed away peacefully at home.

  10. Palto says:

    Thank you so much for sharing your story Arleeda.

  11. JustAnOldLady says:

    So, we should spend millions of Medicare money to keep some old ‘dead’ person alive for a few weeks but have no money for poor young people who can’t afford health insurance……

  12. arleeda says:

    My husband died in August three weeks after a massive stroke. He was in the hospital for 6 days on IV, but was unable to swallow. His MD suggested putting in a feeding tube and sending him to a nursing home. I then asked for a hospice evaluation, as you have to do that on your own. He did have a living will and I was his health care proxy. He began to swallow a little after he went to a residential hospice, but not enough to sustain life. His two sons thought we should go all out with gastric tube and rehab, but he was cognizant enough to respond when the dr asked him if he wanted a feeding tube and nursing home for the rest of his life, or just to be made comfortable. He chose comfort, and I had to carry through on it. Don’t let anyone tell you this is easy, for you literally watch someone starve to death. But he said he wasn’t hungry and was in no pain, except for the night his Foley catheter got clogged. He was given morphine when the dying process started and never regained consciousness. We did have some good days early on discussing our life together. I’m glad it was the right side of his brain that was shot so that he retained language and comprehension, and so I could tell him that I loved him and would always miss him.

  13. karmanot says:

    Same here. Home Hospice made such a difference: quiet, comfortable, low lights, and the ambient of that sanctuary we had created together.

  14. bkmn says:

    I’ve been thinking about getting DNR tattoo’d on my chest.

  15. karmanot says:


  16. karmanot says:

    Thank you Doc—excellent coverage. At some point you might want to investigate euthanasia, a topic sure to stir up a hornet’s nest, but millions of we Baby Boomer seniors on the low end of financial security talk about it openly these days. We don’t want to be trapped in hell-hole State Nursing homes, burden our children or elderly loved ones with the loss of the remaining paltry savings we might have been able to hang onto. Further, those of us with Alzheimers want control of our destiny and dignity.

  17. UncleBucky says:

    Look, boys and girls, I WAS the death panel. Not even any family member helped. I was taken by the docs, “we can do one more thing”….. I should never have said yes.

    The health system is rigged worse than the housing market, job market, and telecom market.

    We are SKI ROO’d.

  18. maria says:

    I’m not sure about the ACA. But if it is like Medicare, if you have to be put in a nursing home, Medicare pays a full share of the first month and a lower amount the second month. Your supplemental insurance may have a set dollar amount, which when that amount is reached the insurance stops paying its full share. At that time, the nursing home will present you and your heirs with legal papers that allows it to pull equity out of the patient’s house for the rest of the stay. A co-worker was in this situation. He inherited the house when the patient died, but the nursing home had a $110,000 lien on it.

  19. Bose says:

    Great summary, Mark…

    One of the best things EOLC planning can do, in my mind, is challenge our miracle/lottery-winning assumptions to put reasonable evidence first. Many of us have grown up in subcultures where it is considered normal and laudable to believe that one-in-a-million outcomes are the only credible or respectable ones to shoot for.

    My grandpa chose decisive yet lower-impact interventions for prostate cancer in his late 80s. He joked to me once about living balls-free, and with no major health complaints at the 2-year point, didn’t go for any more intensive periodic re-scans. At 94, he died a month after his annual trek from Texas to Minnesota, which had gone great. The scan two weeks before he died showed massive issues which he told the docs not to spell out the details of, and he would wrap things up free of tubes, devices or broken ribs, thank you very much.

  20. Mike_in_the_Tundra says:

    In home hospice is available many places. I did not worry about having a DNR and DNI for my husband (although I did have them). He was comfortable due to palliative care. It made my goodbye much easier. It was our last intimate moments together. Obviously, it’s not for everyone, but I would hope that the children will handle my demise in the same way. Of course, they may not be able to do so.

  21. IMHO, you made the absolutely right decision in both cases, not the least of which because it’s what each of them wanted. But also, it’s the decision I’d have made even if their wishes were unclear.

  22. Alan says:

    Reading this brings back lots of decisions I made or was relied on to steer decisions at the end of life for both my parents. My mom had cancer and at best she had a year to live when the diagnosis was made. She ended up living about 4 months because the cancer spread so far and fast. Words that came out of my mouth when I called 911 when she stopped breathing was when the 911 operator asked me to start mouth to mouth. It came out “I can’t” when really what i should have said was that she had told us when the time came not to do anything to extend her life. She was supposed to start in home hospice care the day she died. The week before she died her nurses and Dr. talked to me about stopping chemo and wanted me in on the conversation when they talked with my parents to steer them in this direction. However before that could happen, after talking with my mom, the Dr’s decided to start hospice care but to continue chemo but not as aggressively. Would this have cost more money yes but I think it gave my mom a feeling of not giving up but to also being realistic. I honestly think having good Dr.’s helping families make the proper decisions the outcome will always be better. Sometimes I wonder how much the Dr’s Hospitals and nursing homes bottom line play into steering of end of life decisions. Yes I am a little cynical at times. My dad had a massive stoke, and several times after my mom died he told me never to do anything to extend his life. I had his POA so when i got the call from my brother when they were talking of putting my dad on life support I said no. Could he have Survived? Probably but he would have had to have been put in a nursing home with 24/7 care and who knows how long he would have been in ICU or on life support. This would not have been the quality of life he wanted plus going through things with my mom made this decision so much easier. I hope that wasn’t awful to say, but I still to this day question decisions that were made with my mom even if it meant to have just a couple of more days.

  23. caphillprof says:

    As an attorney, and based on experience, I can tell you that health care directives, health care agents and DNR orders are not 100 per cent effective. You cannot count on hospitals or doctors following these documents. I know of cases where one child, or even one child-in-law, has prevented hospitals from following the terms of health care directives or overridden the instructions of the health care agent.

  24. Drew2u says:

    What provisions are in the ACA for end of life care? I know the teabaggers peed themselves calling this “death panels!!!”, but what did the law do for people making these decisions?

  25. S1AMER says:

    Thanks for writing this. I hope lots of people read it and follow your advice.

    I’d add one thing: If you’re part of a same-sex couple, and whether or not you live in a marriage-equality state (but especially if you don’t), make sure you have your documents with you at all times, ’cause you never know when you’ll run into someone hostile. Also, make sure blood relatives (particularly if they’re hostile, but even if they’re toally supportive) know your spouse (in a good state) or partner (in the other states) has full decision-making authority under your advance directive.

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