Let Grandma go with dignity, and a family’s inability to do so

I can always use money. Regardless of what the public seems to think, doctors are generally not phenomenally wealthy.

So I hate turning business away. But tonight I refused a hospital consult. Why would I do that?

Because.

The consult was for an 88-year old lady with advanced Alzheimer’s Disease. Her sad life was reduced to lying in bed staring at the ceiling.  The patient had been seen by 2 other neurologists during this admission, and 3 others in the year previously. All had told the family the same sad facts of the case.

Yet, the family called me last night for a 6th opinion. A granddaughter poured out this sad story to me, and begged me to come see Grandma. I asked her exactly why she wanted me to come in, since it didn’t sound like I had much to add. Grandma has already had every test in the book.

So granddaughter said, “Because the other neurologists just keep giving us bad news, and tell us to call hospice. We’re looking for someone who will tell us this can be reversed, and who can fix her.”

And that’s why I turned down the consult. Because I’m not going to be a party to this insanity just to collect $100 from Medicare. It’s not fair to anyone, especially Grandma. I bet she’d be horrified if she knew what was being done.

This is sad. But I won’t be part of this family’s denial issues. Me telling them the bad news for a 6th time obviously isn’t going to change their actions. They’ll just keep looking for someone who is either incompetent or willing to lie.

And that’s why I turned it down. Because I respect Grandma. I’ll never know who she was, but I doubt she’d want more docs being a part of her family’s inability to let her life go with dignity.

Doctor Grumpy is a neurologist who blogs at Doctor Grumpy in the House.

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  • Vox Rusticus

    Sad on so many levels.

    If the family were told that any more new consultations absent some significant change in the status of their relative would require payment from them instead of Medicare, I doubt there would be so much interest. Part of the problem with fruitless and wasteful expense in end of life care is that those demanding more services–and not without the help of the doctors and hospitals, I should add–are seldom on the hook for anything at all. It is easy to ask, and even demand, more when one neither knows nor even has to ask or care about the cost.

  • http://sarahbrannonscancerjourney.blogspot.com HealthAdmin

    Great post. I’m a practice administrator who was just accepted to medical school and–believe me–I ain’t doin’ it for the money. I am well aware that the debt I accrue will be astronomical, that reimbursement is on the decline, and that the respect that doctors earn from their abundant training is diminishing with every passing year. And yet, no money is worth the moral conflict or an ethics board review!

    Your article also portrays the reason that I appreciate the concept of so-called “death panels”–but I catch a lot of heat from misinformed opponents.

    Thanks for posting. A physician’s stance is a lot more meaningful and resonates with me much more when delivered through a real experience or personal anecdote.

  • Matt

    Well put. Hospitals should be required to have ethics panels to help curtail this insanity. I see this often for requests for feeding tubes in patients with irreversible disease especially in the elderly because no one wants to have a difficult discussion with the family. Death is inevitable and often the more humane road to take.

  • Greg

    What’s interesting to me about this case is that a late-night consult with a Neurologist only costs $100 to medicare – my plumber costs more than that for late-night plumbing emergencies. My accountant and lawyers both charge more than that per hour, not per case.

  • Killroy71

    Thank you for taking a principled stand. Denial is an amazing force, and what’s scary is they may eventually find a doctor who will be happy to take their/our money for a hopeless case.

    It’s also staggering that this “concerned” family hasn’t bothered to even look up Alzheimer’s on the Internet, and it’s a cinch Granny has had it for some time already. They make the case for the importance of “informed consumers” of medical care.

  • http://bakirita.blogs.com/xico EKB

    I would like to question why “dignity” is so often the word we use when trying to convince people there are no further treatment options. It really is a euphemism, isn’t it? And it isn’t comforting. It’s a cold word for the dying and for those who love them. In the case of the patient described above, I imagine dignity became an irrelevant issue some time ago. I would like medical people in attendance, priests, etc., to say, “There is nothing that will bring her back. It’s time to her go. You can tell her she doesn’t have to worry about you any more and can go in peace. It is time to bring her pain and yours to an end.”.

    • Primary Care Internist

      I would say “dignity” is an appropriate term. It distinguishes the respected and admired elderly woman whose family chooses to let her die at home when the time comes, from the near-vegetative “patient” in the ICU with IV lines, foley, ET tube (or tracheostomy), PEG, pacemaker, bedsore, 4 blood pressure meds, lipitor, aspirin, amiodarone, IV vancomycin & zosyn, flagyl for iatrogenic c.diff colitis, nebulizers, oxygen, pulse oximeter, haldol, ativan, etc.

      I think most laypeople would be shocked to find out what a huge proportion of Americans die this inhumane way in a hospital, not to mention the outrageous costs borne by the taxpayer (perhaps on the order of $100,000 for just such an episode of “care”).

      • http://Www.Twitter.com/alicearobertson Alice

        So doctors understand dignity better than a family? Hmmmm…..interesting…..and will you be consistent when it is your own child that is suffering from a disability? Or will that be different because this time it is YOUR emotions and heartbreak.

        Ethics panels? Appointed by who? Run by lawyers who stand to make money off the death panels we keep hearing are just a conservative conspiracy, but are actually true?

        Are you really saying a panel has more ethics than a loving family? Gosh…..I have lived to see the day lawyers and doctors agree! Bloody well brilliant!

        • Sarah

          Don’t know what panel you are talking about or how it’s relevant here. But to answer your first question (from a patient’s perspective), yes, if I have a family member going through a health crisis, I certainly would seek the opinion of professionals who have helped many, many other families through a similar crisis.

        • Primary Care Internist

          Yes i would say doctors understand from experience that my description above is the opposite of “dignity”. And “loving family” members put grandma through this out of GUILT, not love. Then they are conspicuously absent when grandma is trying to die for the next few weeks. But we intubate them, sedate them, restrain them, but tubes in every orifice etc. all at the demand of guilty families and greedy lawyers.

          And i too do not understand what panel you’re talking about. There is no evil empire making decisions against family wishes to kill off grandma. This is a paranoid delusion.

          • http://www.twitter.com/alicearobertson Alice

            The “death panels” are not the “official” name, they are legislated as “appointed” panels. The legislation is discussed on a board here (link below). But they will override a family and their desires. I am willing to discuss this and give more, alarming journalism on this. We can proclaim that the elderly are expendable, but what are the repercussions? Surely, conservatives know that when something is presented legislatively we should proceed with great caution over the possible consequences, while I believe liberals just want it settled and the faster the better (the band aid approach).

            I volunteer at a Judeo-Christian think tank where the legislative liason has actually read the health care bill ten times. It is truly alarming. Today in the Washington Times they have a very good article about Obamacare and the hazards. It is posted at the liberal Salon.com and I imagine there will be lots of feedback.

            Anyhoo………this is from a few weeks ago and there is information here about the “death panels” which may be slang, but it’s a truthful tag on a real approaching problem:

            http://www.kevinmd.com/blog/2010/10/polst-generation-resuscitate-order.html

  • solo dr

    The insurance companies and Medicare do not care what time or day of the week that I see patients. Christmas day at 6 am, weekly on a Sat/Sun, or after reasonablye weekday hours at 9 pm in the hospital, the fee is the same. Most inpatient visits range from $40-$80/patient/day. The AMA has CPT codes for after hours care, holiday care, and phone calls, yet Medicare and most insurance companies refuse to pay or acknoledge these codes.

  • Marty

    Your principal stand only goes so far. This family has presented to you with, essentially, a family therapy problem. Your refusing to care for this patient is irrelevant. You correctly assessed the situation, but then failed to refer them for the counseling they needed- reflecting your frustration with the situation- and disregarding what was really needed here. This may sound harsh, but by not doing this, YOU are part of the problem, too. There comes a time when doctors confuse prolonging life with prolonging death- and the healing process necessary for the family as well as the patient.

  • ErnieG

    Dr. Grumpy’s story is unfortunately too common. Physicians are not trained in dealing with this aspect of death and making the difficult decisions. After all they are medical healers, not psychologist/priests who help people deal with the difficulties of dealing with the personal and psychological/spiritual consequences of death. This is reflected in Dr. Grumpy’s (and other physicians) description of death as “dignified”. I am pretty sure that this patient’s condition and eventual death will be nothing but dignified- it will be nasty, filled with foul smelling secretions, empty stares to the ceiling, and senseless mutterings. Although I agree with the idea that physicians need to learn when to let patients “go”, I think that the description of death as dignified, or the idea that physicians are giving/allowing end of life patients “dignity” by stepping back are not accurate.

  • ErnieG

    I’ll again take issue with the word dignity. My 30 year old cousin who died of metastatic aggressive NHL at home, swimming in his secretions arguing to his mother not to wipe his bottom because he was embarrassed is not dignified. There is nothing heroic about the way most of us die. I think we need another word to describe how we let nature take her course. It is hubris to believe we physicians are in a position to give dignity to human beings.

    • Primary Care Internist

      It sounds like good home medical care / home hospice would have benefited him. This might have provided him with an aide for his personal care, and maybe meds for his secretions. I think this beats dying in a hospital or nursing home.

  • Killroy71

    EKB and Ernie G — Death is not always “dignified” in the way we think of that word, but a person’s wishes about it can be dignified by observing them and not, as one responder put it, prolonging death where there is no quality of life. But, doctors and families need to elicit those wishes before the stage arrived at by the woman in this anecdote.

    And why aren’t doctors taught how to deal with these situations, anyway? Sounds like a horrendous gap, since no one gets out of here alive — and if doctors can’t face death, then they also need psychological counseling so glibly prescribed by a previous poster.

    And death CAN be dignified. My mother, whose system was gradually shut down by a brain tumor, choked to death on being fed jello in a nursing home–not dignified. My father died of in the home of my sister, who was reading to him from “Conversations with God” (true story, people) — that was dignified, and as he wished it, as opposed to being in a hospital with family and staff prolonging his death with ridiculously expensive heroic measures.

  • http://bakirita.blogs.com/xico EKB

    Rather than the doctor turning down the consult in the above post leaving the families and others such as this one adrift,we should work hard to acquire the courage to tell them that further intervention to extend life will not bring anything they or the patient wants, that you will be there to offer as much as you can to alleviate their suffering. It is too easy to evade the obligation to offer truth and compassion to the dying and their families by deciding you know how a family will react. No one ever knows how a person will react. A compassionate doctor or social worker or nurse or priest can be summoned to sit a family down in a quiet place to offer comfort and empathy and truth. A compassionate doctor or nurse or whoever can tell the family that at least now, the person can be made comfortable but If they keep chasing the impossible, they may in fact worsen their experience of death.

    And to clarify my point about dignity: Yes people have the right to death with dignity if by dignity you mean to be treated ethically and with respect. But I would put first that if there is the opportunity, it is more important to make the effort to treat the person andd family with compassion and tenderness and gentleness and concern to avoid as much as possible discomfort.

  • http://drpullen.com Ed Pullen

    The real problem was that these issues were not discussed long before, when Gramma could have had input. Had Gramma told her physician and family 10 years earlier her wishes, it might have been easier for the family to make appropriate decisions. Why don’t physicians do this? It’s hard work, no one pays us for it, and so it’s really easy to overlook this problem. I posted about this issue recently and think if Medicare not only paid for this service, but paid better than for most services, it would happen and save both grief and money.

    • http://Www.Twitter.com/alicearobertson Alice

      This is a valid point, but let’s add to this….Dr. Grumpy could be Dr. Cheerful if the government upped the anty to keep our aunties alive. But keeping granma alive wasn’t lucrative enough for his valuable time….I mean he is admittedly grumpy from his tireless duties…..why add to his workload? Does he wear a black or white coat to bedside?

      • Primary Care Internist

        Actually keeping grandma alive is much more lucrative then being honest, and saying nothing further can be done. Between medicare payments, and probably moreso the threat of malpractice, it is much much easier to NOT have a prolonged discussion with an unrealistic family, and rather just to do what they want (intubate, iv antibiotics, catheter, c.diff colitis etc.)

        This is the central point of this post, at least what I took from it. I think Dr. Grumpy deserves an award for turning away essentially free money, in order to do the right thing.

  • gerridoc

    I have cared for patients with similar scenarios in my years as a clinician, and I think that the family didn’t want to face the fact that their loved one wasn’t going to get better. If Hospice was recommended for this patient, I feel sure that more than one medical professional had attempted to explain the prognosis to the family. This is either magical thinking, pathological denial, or the family didn’t want to lose Granny’s Social Security check.
    Bravo, Dr Grumpy. Thanks for calling it as you see it.

  • gerridoc

    Primary Care Internist, there was a recent article in the local paper highlighting this problem. It profiled an elderly woman with multiple hospitalizations and stays in the ICU over an 18 month period. Her total bill was for 1.2 million and Medicaid paid 80,000 dollars. Despite multiple discussions with the family regarding prognosis, the son steadfastly insisted on continuing aggressive care.

    • http://Www.Twitter.com/alicearobertson Alice

      Is cost the main thing here? How much money did the hospital make, or others, keeping them alive? How did this patient actually die? Was hospice called in? Or was the focus on the cost of keeping someone alive the driving issue? Talk about price control! If the answer is the cost then where is dignity buried, or ever raised? Is it a conscience comforter to those who are into price policing? Does this then set precedents that each of us has a price on our heads under the guise od dignity? Orwellian?

      If this is adopted, surely, this mindset will have repercussions. Repercussions that go way beyond labeling granny expendable. I guess it is flustering to me that it seems the meat analogy has been true, I just was in denial…..but more bothersome is men deifying themselves while extinguishing life and patting themselves on the back while doing so. Woe to those who call evil good, and good evil.

      • Primary Care Internist

        Geez, where do i begin???

        “How did this patient actually die?” Well Alice, old sick people just die. That’s it. We may be able to somehow surmise that it was pneumonia, or an acute myocardial infarction, or stroke, or septic shock, or whatever. But old sick people die. That’s what they do. It has been true since the beginning of time, and will be true for all of eternity to come. Not from “choking on jello” as one poster said, or because they got 1000mg instead of 650mg of tylenol, as in the IOM report.

        And the exorbitant costs of end-of-life care are just an added bonus to the current model, one which hurts way more patients than it helps. And anyway, should we entirely ignore costs? Somebody has to pay for it all, right? Do we completely take away all connection with costs from patients and families?

        I would say end-of-life care costs in NYC would plummet overnight if a measly 1% of costs for hospital/icu etc. were picked up by families of “dual-eligibles” ie. patients with medicare and medicaid, who today have NO skin in the game whatsoever.

        • http://www.twitter.com/alicearobertson Alice

          Actually keeping grandma alive is much more lucrative then being honest, and saying nothing further can be done.
          [end quote]

          I think you missed the point. That’s why I asked the questions I did. Have you studied up on death panels? Patients in the last six months of life are costly to the government (Medicaid/Medicare). Study the UK healthcare system and see what human rights really sick people have.

          • http://Www.twitter.com/alicearobertson Alice

            I know this thread is “dead” but I now see the light. Paul Krugman has been on TV supporting The Medicaid Advisory Board and the way they will cut costs and save all sorts of money with treatment denials…..but today he said a VAT and death panels are the budgeting method we need:

            Here’s the key excerpt:

            “Some years down the pike, we’re going to get the real solution, which is going to be a combination of death panels and sales taxes. It’s going to be that we’re actually going to take Medicare under control, and we’re going to have to get some additional revenue, probably from a VAT. But it’s not going to happen now.”

            The Obama healthcare plan passed by Congress in 2010 includes government-run healthcare committees with sweeping powers, including the power to engage in competitive pricing and cost analysis, a system used by Britain that has led to rationing of medical care for the elderly.

  • AnnR

    My Dad died in Pallative Care and during the time when we stayed with him before he passed at least three different people who came to visit told us that this was what he’d told them he wanted – no tubes, no machines.

    I think it does not hurt to make your wishes known well before the moment approaches.

  • http://bakirita.blogs.com/xico EKB

    Atul Gawande wrote a superb, gripping, heart-wrenching article on this subject which appeared in the August 2, 2010 issue of The New Yorker. It should be required reading for EVERYONE. There has already been a lot of very positive comment on it. Important points (a bit shaded by my memory):
    1. People really don’t know how they will react when they or their family members are facing imminent death. The notion that you can write what you want a month, a year, ten years before and then think you will stick to it is naive.
    2. It is a decision for the dying person, and some people will fight death all the way. They shouldn’t be held to a piece of paper written in what was a different world.
    3. Hospice should be offered not as a death sentence but as a place to go where you can also get treatment. Gawande points out that people in hospice who also get care do sometimes live well longer.
    4. In any case, it is really, really important to realize that a patient’s dying is not something that is merely an inconvenience for staff, even though on a busy night in an ER it can feel that way.
    5. The preparation that should be done is to offer palliative care of a sort that doesn’t deny treatment or prescribe length of time you’re allowed to live. It should be a place where the very sick and their families can build trusting relationships with people who may ease the way, or at least comfort.
    6. This is our final passage, and it is a frightening one, for some, the most frightening, especially if they know it is coming. Why did the grandmother’s family take her from doctor to doctor? What were they really searching for? Perhaps to conquer their fear? to find a space where she would not be rushed along? To ease their own fears of life without her? No matter what, some family members are going to go berserk, some people will die in terror.
    7. People should know enough if they have a long-time sick relative to recognize that the ER is NOT the place to go when you’re pretty sure you’re dying. But even this, we can’t really control for everyone.
    8. Ultimately we have to listen to the dying and their families and try to be there for them as they need us to be. Death is really the whole enchilada. We need to figure out how to help people through the process. Counseling beforehand helps, but it’s what happens at the final moments that matters most.

    • http://Www.Twitter.com/alicearobertson Alice

      This was a nice summation, and I do like Atul Gawande….yet, I hesitate. I like the hospice involvement. I agree with dying with the least amount of pain possible….but dying with dignity is relative. I do like the medical community, that is dedicated to saving lives, playing the Grim Reaper. These same arguments come into the abortion battle, and they are overall healthy infants being snuffed out because our civil law system has a Supreme Court based on the morality of who the appointee is. I am very much against ethics panels. And must say I find it quite an irony that a lawyer would suggest doctors present these cases there. That could be the precedent that bites back….a snare?

  • gzuckier

    Well, this is an extreme case; but (speaking from experience) never underestimate the human ability to rationalize, deny, and indulge in magical thinking when something serious is on the line, no matter what rational, sober analyses had been settled upon a priori. Particularly when the patient is conscious, even if there is no positive prognosis at all and there is nothing but suffering going on.

    On a less somber note, it’s reminiscent of the somewhat frequent scene in comedy horror movies and the like;
    “OK, I’m going in there to fight that thing, lock the door behind me and don’t open it, no matter what I might say”
    “OK”
    Hero goes through door, sidekick locks it. A few seconds pass;
    “Let me out!!! Open the door!! Let me out!!! Let me out!!!! Open the door!!!”
    etc.

  • SJR

    I can’t help but be reminded of when we had to put down my dog for a severe intestinal injury. (Sorry, I can’t think of a human example here).

    We were clueless as to whether he was going to die. He actually looked good and was on pain meds. But the reality inside his body was harsh and the surgery failed.

    But we didn’t know he was going to die, and the vet didn’t tell us his opinion. It was the vet tech who came into the room while we were sobbing and explained that death doesn’t come like going to sleep, like many people think. It can be a long, drawn-out, and painful process. She added that no one on staff felt our dog was going to make it.

    That helped us to do the right thing and we chose (agonized) to put him to sleep. But the key thing was that we trusted the health care providers and their experience.

    My experience is that (human) physicians are reluctant to come out and say, “Grandma’s dying. It’s time to say your goodbyes. I’m so sorry.” I think it would be helpful.

  • http://Www.Twitter.com/alicearobertson Alice

    I was reminded of Dr. Pullen’s remarks when I read this article about death and planning…and dying at home. I found it thought provoking:

    TEDMED: Alexandra Drane, Starting a Conversation About Death

    http://blogs.wsj.com/health/2010/10/28/tedmed-alexandra-drane-starting-a-conversation-about-death/

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