Building a Better Health Care System: End of Life Care – A Case Study

She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.

She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.

Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.

My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.

The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.

The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”

Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.

“Bearing witness is our most important role,” a mentor once taught me.

I came in to round with Elaine. We went immediately to the patient’s room. The son and one of his sisters were there supporting their mother.

In the bed I saw a pale, thin, older woman who appeared to be lying comfortably. I asked her if she was in pain. “Would you like some tea?” she asked.

I told her she didn’t look ninety-four. She smiled. I told her she had a beautiful smile, and she smiled again.

We proceeded to discuss the medical issues with the patient’s son and daughter:

Advanced dementia
Weight loss
Multiple falls
Hip fracture
Irregular, potentially unstable heart rhythm

“What would your mother want?” I asked them. “If she could decide for herself, what would her goals be?” Given her frailty, even with repairing the hip she’d never walk again.

Understandably, the concerns were about her suffering and feeling pain. At the moment, we were all in agreement that she looked comfortable. I broached the subject of not doing anything to treat the arrhythmia or the broken hip. Of not putting the patient through surgery.

The son was clear. “She wouldn’t want surgery,” he told us. His sister agreed. Consensus! We would refer her to hospice. She’d live out her days in comfort, forgoing the indignities of further medicalization.

At that moment, the orthopedic nurse practitioner walked into the room, carrying a consent form. She approached the opposite side of the bed. Before she could launch into her speech, I cut her off. “The family has decided on hospice,” I informed her. I asked to speak with her outside.

“We’ve only not operated on two occasions that I can remember,” the nurse practitioner told me. Her comment unnerved me. Clearly we were deviating from standard operating procedure here. “If a hip’s broken, we fix it,” is what she was telling me.

She documented our conversation and the fact that the family had declined surgery in the chart.

I went back in the room. I asked the family if they had any more questions. Satisfied that we’d answered everything to the best of our abilities, I excused myself and Elaine. We thanked the son and daughter for their courage, and affirmed that I thought they were making the right decision to forgo surgery.

Outside the room, we debriefed about the encounter. I was very proud of Elaine’s poise in a difficult patient/family situation, and how well she reasoned through the multiple options. I told her that I admired her instinct to mitigate harm to the patient by not over-medicalizing the situation, as many would have done since it’s almost always the path of least resistance in the hospital.

Alas, we congratulated ourselves too soon.

The next morning I came in to round. The patient’s name was still on our list.

We went to her room. She wasn’t there. But the bed was missing, too.

“Did the patient in 1214 get transferred to hospice?” I asked to no one in particular outside her room.

“She’s in the OR,” said the ward clerk.

What the fuck?

I was furious. A patient whose dying wish was to be made comfortable, at 94 with dementia, severe weight loss, who’d never walk again, had been “taken” to the operating room, possibly against her family’s wish to have her broken hip “pinned?”

How had this decision been made? Who’d made it? And why the fuck had nobody talked to me about it? As the attending physician, I was legally and ethically responsible for the care of the patient.

I called the OR. I got the surgeon on the phone. “This patient had an advance directive. Her son, who’s her power of attorney, wanted her to go to hospice. What’s she doing in the OR?”

“I’m just covering my colleague,” came the reply. “He consented her. I’m just going to ‘pin’ her hip, not repair or replace it. Please clarify this with the family and let me know what they want to do–as soon as you can–she’s already on the table and the spinal’s been administered.”

Great. The train had not only left the station, it was already hurtling down the tracks. I did not appreciate the ‘covering’ surgeon’s passivity. He was just doing what he’d been told. Hey, fella-how about taking some responsibility to clarify and verify things before cutting on anyone? Did it strike you as weird to take an emaciated, demented 94 year-old to the operating room?

Apparently not. Not at all. I remembered the nurse practitioner’s bizarre comment from the day before: “We’ve only not operated on a broken hip twice.” Is that because those patients were already dead?

I found the family in the surgical waiting area. Oddly, it was the patient’s other two daughters, not the power-of-attorney son and nurse daughter with whom I’d spoken the day before.

“Did you and your siblings consent to this procedure?” I asked them. “Yesterday your brother and sister told me that they wanted no further intervention–they wanted your mother to go to hospice to live out her remaining days in comfort.”

“Well, yes,” one of the daughters told me. “They told us it’s a minor operation and will just ‘stabilize’ things before she goes to hospice. They warned us that she’d be in pain any time she moved, and we didn’t want that. Isn’t this the right thing to do?”

With all my soul I wanted to scream at her, “Let your poor mother die! Why on earth would you subject her to this ridiculous ‘operation’ and spinal anesthesia? And what the fuck kind of surgeon comes by after the decision has been made and brainwashes a poor family into an unnecessary operation and doesn’t have the courtesy to discuss the ‘plan’ with the attending physician?”

But I didn’t say that.

She needed my support. “Well, this is among the most difficult situation anyone ever faces,” I said. “There’s no right answer. For some people, NOT doing surgery would be the right decision. For others, a sense of fixing what’s broken will seem like the right course of action.”

I asked the two sisters if their brother and other sister had agreed with this. I was surprised that they weren’t there at the scene. Perhaps the power-of-attorney brother who’d made a resolute decision a day earlier based on what his mother would have wanted had changed his mind. Perhaps he’d felt guilty disagreeing with his sisters, and wanted consensus above all else. Perhaps it really was a ‘minor’ procedure and the right course of action to mitigate the mother’s suffering.

But I’d seen her in her bed. She’d smiled at me. She’d discussed having tea. She wasn’t writhing uncomfortably or looking in distress.

I was angry. Had the consenting surgeon simply seen dollar signs? No broken hip goes unfixed? He’s a hammer and the patient was a nail?

Let me take the high road: Maybe he genuinely believed that pinning the patient’s hip would improve her quality of life in the days she had left. Maybe he had some evidence I’m unaware of that pinning hips in demented 94 year-old patients is the most efficacious plan of action. All bow down before the Gods of Evidence.

But he should have spoken with me. As a colleague. As a professional. As the one responsible for the patient’s care. Maybe he could have persuaded me that this was the right thing to do. Maybe he’d have even turned the tables and shown me that I was the one being inhumane. After all, how ‘right’ is it to send a feeble old woman to die with a broken hip?

Too bad for all involved here that his thought process was not made transparent. He and I will clearly be having a conversation, likely with hospital administration in attendance, about what happened here. This is a conversation we should ALL be having.

John H. Schumann, MD is a general internist and medical educator at the University of Oklahoma School of Community Medicine in Tulsa, OK . He is also author of the blog,GlassHospital (@GlassHospital), where this post originally appeared.

25 replies »

  1. People can’t handle the truth in America. People are born impaired and have little quality of life, yet society demands that family has to accept the full and complete responsibility to do everything possible to maintain life. Then we have horrendous trauma injuries, be it from MVAs, war, or other unseen causes, and have to push for full court press interventions, only for what? Not their comfort and opportunity, but the bystanders’ comfort and opportunity. Am I really off base in this appraisal!?

    Then, the elderly and chronically ill, what do we do to them? Yeah, no one here really has the intestinal fortitude to write what is truth, but it is what it is: keep them alive not for their benefit, but the family, the people who can’t deal with death, the people who give unrealistic outcomes only the profit margins others benefit from.

    This culture, this society, is shameful. And equally what is shameful is someone will come here and chastise me for writing this comment.

    Yeah, your denial and deflection and projection is more shameful than anything I write, dears!

  2. As an anesthesiologist I see this all the time, but AFTER all the discussions have taken place. I’m in the enviable position of having no choice but to do the case whether I want to or not, or whether I think it’s right, without the benefit of any other doctors ever talking to me about it. Surgeons, especially specialists, tend to think if you consult them you want them to fix something. It doesn’t occur to them to discuss it with anyone else.
    On my blog I emphasize to families the importance of picking ONE person, one doctor, whom they trust and try to limit the information coming in to the information from that person. Each doctor that adds input makes things more confusing.

  3. I applaud you for your effort to provide counsel the family toward reasonable end-of-life decisions. Both the health care industry and much of our society has a long way to go to accept that death is inevitable (and can be an enemy defeated with faith). Making fear-based decisions, we spend our most our lives and resources prolonging death instead of living fully.

    Thanks for the post.

  4. Once had the lab at a hospital call to tell me a result was an absolute critical value and the patient needs to be assessed or might die. Yeah, nice the lab examined the specimen 10 hours after the code was called!

  5. The problem is there is no quality of life assessment. You have to be nearly dead before their lab tests say you are not good. most doctors spend 5-10 minutes with their patients. What can you really know about someone in that short amount of time.

  6. I think just having an advanced directive isn’t the entire answer. I remember having patients get central lines for I.V. nutrition because they had a stipulation of “no feeding tube”. I thought giving I.V. nutrition violated the spirit of the directive, but others (including family members who weren’t even aware of the directive!) didn’t, so further aggressive care was not ruled out. I tell people to talk to one or more people who you believe can represent your wishes and name that person in your advanced directive. You can’t predict every possibility, and it’s impossible to cover all your bases. I heard a patient advocate once recommend that “no restraints” should be included as it’s difficult to put in a lot of tubes of any sort without restraints. Unless, of course, you give a lot of sedation…I guess there are ways to get around everything. The main thing, I think, is for physicians to have frank discussions with their patients (or refer to a reliable source for guidance, if they don’t have time), and perhaps more than once. When asked, I tell people I’m against torturing old people, but I must admit not everyone understands the consequences.

  7. Interesting questions, Barry Carol. I have no idea. The Wikipedia link speaks of second- and third-generation advance directives. My layman’s guess is that as in the case of abortion, the states have a duke’s mixture of sometimes incomplete, contradictory and/or overlapping legal requirements. Such is the price of federalism.

    I recall recently being informed that in Georgia no one listed as a “witness” to the signatories can be a member of the family. And the designated agent for medical decisions cannot also POA for estate matters (which makes sense).

    I like your ten-dollar per month charge for not having an advance directive on file.

  8. If the patient had a valid living will or advance directive as part of the medical record, would that have been the end of the story? Under what circumstances, if any, could the person with the POA override or ignore it? Is that something that varies by state?

    I repeat my suggestion that Medicare beneficiaries should be charged an extra $10 per month or so for their Part B premium if they DON’T have a valid living will or advance directive with the information stored on a registry so providers can readily access it when needed. While it could be updated or changed at any time, we could also require that it be reaffirmed, if no changes are desired, at least every five years. We need to more consistently ensure that patients in end of life situations get the care that they want and not get the care that they don’t want. While this objective is inherently desirable, in my opinion, a happy byproduct is that it would likely also save money for the healthcare system and for society that could be used for other important and worthwhile priorities.

  9. I’m with you per the last comment. Bram Stoker never realized how accurate his line in Dracula was: there are worse things than death.

    Interestingly, living amongst the current crap, er, crop of politicians seems to define this line as well.

    We are doomed with the status woe, er, quo as set.

  10. This is an important post on several levels, including how best to inform non-medical people about medical issues, the challenges of medical professionals to communicate better among themselves and how medicine can unwittingly create more legal problems than it solves. I wish I had a remedy but the best I can suggest is more widespread awareness and execution of advance directives. To that end I used Dr. Schumann’s excellent post in one of my own.


    Anyone with a life-threatening medical diagnosis and all beneficiaries of insurance, Medicare or Medicaid over the age of 60 should complete an advance directive to be kept on file in several places, properly witnessed, and updated no less than every four or five years. Fees, surcharges and discounts can easily drive this important part of health care until one day it will be as routine as vaccinations.

  11. The author has not clarified exactly what actually happened. Here is what the post says:

    “Did you and your siblings consent to this procedure?” I asked them…..
    “Well, yes,” one of the daughters told me. Presumably, this means that the brother with POA consented – although that is not entirely clear.

    If they did not get consent from the brother with POA, then they did not have a valid consent for the procedure and they committed a “battery”. In addition to malpractice, they could be liable for criminal charges.

    As a physician who has obtained consent for many procedures over the past 30 years, I will tell you that information on many patients is poor/lacking and understanding of the laws related to informed consent is also poor.

    In my experience, many times the nurses taking care of the patient don’t know exactly what the legal mental status of the patient is. In my state, unless a patient has been officially declared incompetent (by 2 physicians) they are presumed to be competent to consent to a procedure.

    If the patient is obviously incompetent, (comatose or delirious) certification of incompetence is required before “substituted consent” – consent of relatives – can be obtained.

    Frankly, if the patient’s son had POA and the nurses knew it, more likely than not the patient’s family changed their mind and decided to go through with the surgery rather than the surgery being done without consent.

    Take home message – chose the person who has POA carefully and discuss your expectations with them in advance. I told my kids that if I am sitting in a wheel chair, drooling, with a catheter in my bladder they should just shoot me. Hopefully, I have made my wishes abundantly clear!

  12. The son with the POA should have sued the surgeon and the hospital for battery. That’s the only way this would not happen again in the future.

    If the son had POA and the hospital knew about it, they had zero excuses for accepting the sister’s consent.

  13. Thanks, Dr. Schumann for a moving story.

    The fact that concerns me, however, is how one doctor can seemingly willfully overrule a decision by the patient’s attending physician and the patient’s designated POA — and no one speaks out or steps in before what can only be called a rogue action is undertaken!

    Where are the checks and balances in the hospital? Why didn’t your patient’s nurses, who have access to your patient’s chart, speak up?

    Seems that the hospital’s procedures are not only lacking, they’re badly broken!

  14. Good question. Did the Son who was the POA sign and consent to the surgery?

  15. I believe it is a misconception to talk about the culture of institutions. In my experience there is frequently quite a bit of difference in the philosophy of different docs practicing in the same institution.

    Of course in the future as more physicians become employed and are subjected to greater oversight things will homogenize.

  16. “The local health care culture matters a lot in cases like this.”

    That’s for sure.

    The question is how do we change the culture of institutions that believe in aggressive treatment? Is it changes in payment policy? Is it spending and outcomes comparisons with institutions that practice more conservatively that will the more aggressive institutions look bad? Any ideas?

  17. It’s not as easy as it seems when you’re in the midst of a decision like this. It’s hard for family members to let go and not feel guilty. Objectively, I know what the right answer is (to avoid suffering) but I have had feelings that “something more might change things” when it’s someone I care about involved. After my son was declared brain dead from a car accident, I sat at his bedside praying he would just wake up while waiting for him to be an organ donor. I knew the drill; I’d seen it many times before and wondered how parents could try to hang on when all hope was gone. But there I was – feeling the same way. Even now (15 years later) I feel I must have let him down in some way, even though I know that’s not true. It’s hard to be listening to your brain when your feelings are so strong. It would make it easier for families if at least they heard the same thing from all clinicians.

  18. I read this post with interest as my mother was in a similar situation in 2002. She was already in an inpatient hospice in the last stages of esophageal cancer when, awakening one night, she tried to get out of bed by herself instead of summoning the nurse who was 15 feet outside her door, fell, and broke her hip. No surprise, as she had grown so frail she was no longer able to walk any distance without assistance. After a discussion with her hospice doctors, in which it was noted that the operation itself might kill her, she decided against having the hip repaired (unlike the patient in this anecdote, she had her full cognitive capacities), understanding that the pain medications required would impair her consciouenss. There was never any pressure otherwise. She drifted out of consciousness within about 48 hours and died about a week later, in no pain as far as we could see. Impossible to know how much longer she would have lived with an intact hip; not long, is my guess. This all happened in a community in Iowa with a strong history of hospice and a very, very low score on the Dartmouth intensity scale. The local health care culture matters a lot in cases like this.

  19. As long as people deny death, we are doomed.

    The fiscal cliff debacle shows we have no leadership, no representation, no clue how to problem solve.

    What is America going to be in 20-30 years, more people in nursing homes, chronic care facilities, hospices, while the minority percentage toils to support dependency? This is the best we’ve got!?

  20. It is unfortunate, but I believe many physicians are pressured by their employer (hospital, medical clinic, physician group, etc…) into performing unnecessary procedures like this for the sake of generating more revenue and not really for the overall well-being of the patient. This is why it is so important for everyone to assign someone as their power of attorney and make sure that it is someone who can communicate your wishes very clearly to the medical staff.

  21. One thing was not clear – did the son who had POA consent to the procedure?

    If the son (and his sisters), after hearing what you had to say, and what someone else had to say, decided on surgery then our system is functioning the way it is supposed to.

    I want to emphasize that it is functioning the way it is supposed to – but not necessarily in the way that is best for the patient and our society.

  22. I read this post after a searching the words “the big picture and improving end of life care”. I am semi-retired nurse and a hospice residence volunteer who has a yearning to help to improve the big picture of how we will die. This is a good example of the choices and dilemmas faced by families and clinicians about treatment choices at the end of life. I commend your advocacy on behalf of this frail woman and feel frustrated about the lack of communication between the clinicians involved in this case.