Why we cannot keep the costs of end of life care in a reasonable range

“J.T.” is 92 and clearly a soul who lives to the beat of a different drummer. She has no children and her closest relative is a niece who she despises. Despite this the niece oversees her care, sending in a full time aide and her personnel assistant to run the household. J.T. will not come to the office for a visit. If I call and make an appointment to see her in her home she at times will not permit me into her home. Despite her abrasive nature she is legally competent to make decisions and remains thin and frail but with no major acute medical problems. She is cognitively impaired to a moderate degree but legally competent to make decisions.  She too has executed a living will and has a large “do not resuscitate” form posted on her refrigerator door.

Several months ago the niece called me to say her aunt was failing. She claimed she was ungroomed and refusing to bathe or eat. She said her hair was unkempt and nails long and filthy. She said she wasn’t eating.  She asked me to make a home visit.  I went out to the home with my nurse.

Upon arrival the patient at first did not want to let me in. I pleaded with her and she opened the door and invited us in. She was in a clean house coat. Her hair was wet having just gotten out of the shower. She was clean. The home was spotless. I asked her if I could have a cold drink so that I could get a look at the inside of her refrigerator. It was full of fresh food and beverages and was spotless. I asked to use the bathroom which was clean and spotless. The patient remarked that she had been under the weather the week before and had cancelled her weekly appointment at her nail salon.  I took a history, reviewed her medicines in their original pill bottles in the closet to check for accuracy and performed a brief but thorough exam. I pronounced her fit. We reviewed her end of life issues and choices with her and the aide. She said that if she got ill she would prefer not to go to the hospital unless I needed to send her to relieve pain and suffering.

Last month my office received a call from a new aide saying that the patient had fainted at the dining room table and was uninjured. By the time she got over to check on her she was up and coherent. The patient had no chest pain or breathing problems. She had no neurologic deficits. She had no visible seizure activity.  The aide called 911 before calling my office and the paramedics were there and were transporting her to the ER.  The patient did not want to go but the niece, who has power of attorney insisted that she go.  Upon arrival in the ER she was fine. A CT of the brain was performed upon arrival and was non-diagnostic as were her EKG and blood chemistries and electrolytes. This was all completed before my arrival.

Upon my arrival I met the new aide.  She was quite glib and forceful. She told me she had been the caregiver for the niece’s mother. When the mother passed on several weeks ago, the niece had fired her aunt’s longtime aide and replaced her with her mother’s former care giver.

We kept the patient in the hospital overnight for observation. She was seen by a neurologist and by her own clinical cardiologist who had not seen her in three years since she became a recluse. By the next morning the patient was fine with all tests and scans normal.  I wrote discharge orders.   Two hours later I received a phone call from the floor nurse telling me that prior to discharge her heart rate had dropped to below 40 beats per minute without her suffering any symptoms of illness. The cardiologist suggested we keep the patient and have her seen by an electro physiologist for evaluation for a pacemaker. I called the niece to explain the change in plans and she actually accused me of keeping her aunt and suggesting a pacemaker to generate a higher bill.  I suggested we ask her aunt if she would consent to a pacemaker if she needed one. She said she would.

The electrophysiology physician did an evaluation and determined that the patient did not in fact need a pacemaker. We then planned to send her home again.  I set up a phone conference with the niece and caregiver and suggested that we return to the original plan of only calling 911 or moving the patient to the ER or hospital if we needed to for the relief of pain and suffering as originally planned.  The niece refused to follow that plan. She told me the aide didn’t want to stay in the house with a dying individual and she instructed the aide to call 911 whenever she felt it was appropriate. “I can’t have my aide watching my aunt die at home. “

The decision of the niece clearly is contrary to the wishes of her aunt. It is one more example of the public being unwilling to provide comfort measures at home and follow the guidelines outlined by their senior relatives when they were competent and able to make their choices. It is one more example of why we cannot keep the costs of end of life care in a reasonable range.

Steven Reznick is an internal medicine physician and can be reached at Boca Raton Concierge Doctor.

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  • penguin50

    This is a tragedy on many levels.

    Can someone with a legal background tell me which has the greater authority in situations like this: the patient’s living will OR the person who holds power of attorney for the patient’s health care and disagrees with the content of that living will?

  • Maggie Beaumont

    Can someone tell me WHY the niece holds the power of attorney? The aunt could name anyone, and should — perhaps the long-time aide she trusted, or her doctor, if she doesn’t have a friend who could do it. But the niece she despises obviously DOESN’T have the aunt’s best interests — and preferences — at heart.

    From my perspective the drop in heartrate pre-discharge was probably caused by the daunting prospect of going home to an aide she hadn’t chosen and knowing that she would be brought to the ER again any time the aide wanted a break.

  • karen3

    Steve, I suggest that you consult an attorney and get a better understanding of a medical power of attorney. They are typically operative if the patient is not competent. If the patient is competent, and POA is not going to overrule the patient. If the POA somehow and bizarrely allows the POA holder to overrule the patient, the solution is as simple as the POA issuer ripping up the POA. Problem solved.

    • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

      The relative is both the health care surrogate and the power of attorney on all legal issues. The relative financially supports the patient and has for years. The patient does not wish to lose that support.
      This is one vignette out of 3 or four involving Medicare costs and end of life decisions that I have written about , posted on my blog and KevinMD chose to publish.

    • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

      In my 3 stories either patients, their partners or their legal guardian power of attorneys change their mind and often opt for more extensive and or aggressive care at the end of life then they originally chose or wanted. They have that right. In this particular case the issues were reviewed with a elder care attorney and the documents were in order. The patient did not wish to risk losing the financial support of her only living relative and did not change her niece’s orders. As for calling physicians spineless and illiterate isn’t that a bit aggressive and rude for a blog?

      • DavidBehar

        Steve: Lawyers like you need to be sued, enjoined, and charged with health care fraud, see the inside of a prison. You are the reason for the 25% of Medicare wasted on futile end of life care. Your profession must be crushed. I would support a direct action movement of patients and families that would bring violence to your profession.

      • Amy

        “The patient did not wish to risk losing the financial support of her only living relative and did not change her niece’s orders.”

        That sounds like a tough situation, and my heart goes out to your patient for having found herself in a situation where she had to make a compromise like that. My father also had a written living will and a yellow DNR form (several, actually, scattered around the house, plus the wallet card), and I was his designated health care surrogate, but neither I nor anyone in our family ever would have gone against his wishes.

        Family dynamics and some of the legal situations
        surrounding end of life care can be messy, but it sounds like you did and are doing all you can for your patient; and by sharing this story you are helping to make others aware that controlling end of life care costs is not quite so easy as simply saying “well duh, just stop spending so much money on dying people, you greedy doctors!”

        Thank you for writing this article.

        • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

          You are welcome. It is very complicated and time consuming in addition to costly to pursue legal action. You have to keep in mind that even if you are upset with family decisions the patient must come first and you are not upset with them

  • Guest

    What a nightmare. For the patient, primarily, but as you note, also for the medical system.

    I don’t have a legal background, could someone explain to me what steps someone in the patient’s situation could take to enure that her wishes, not her niece’s wishes, can and will prevail?

    • DavidBehar

      There is nothing. There is a confused, weakened patient. There is a vicious, rapacious family member and her vile lawyer. The path of least resistance will always be the path taken.

  • DavidBehar

    About 25% of medicare is spent on futile, painful, end of life care. It represents a crime in the form of health care fraud and unnecessary care. The families have been empowered and entitled by the lawyer who wants to enlarge government. Statutes must be enacted that will crush these families and their lawyers. Immunize all end of life clinical decisions. Doctors are now allowed to stand in for their patients. Doctors should therefore enjoin these predatory families from interfering with their clinical decisions. Then they should sue the families and their vile lawyers for elder abuse on behalf of their patients. Win one case, and all futile care goes away because no lawyer will risk the exemplary damages of an intentional tort.

    The most cowardly weak link in the chain? The hosptial or nursing home administrations. These cave into these vicious family members, threatening doctros and plundering tax funds for their own sicko agendas. Sue the administrators and the hospital if they so much as let out a peep in support of the family or lawyer. Sue the legal counsel of the hosptial for failing to warn the hospital of betrayal of duty.

    Next, the CMS should start to refuse to pay, then seek to collect all costs, including all legal costs from these vicious families. These families have used the threat of litigation to defraud the taxpayer, and some should get prison time.

  • Suzi Q 38

    I think that the niece just wants her to die in a nursing facility.
    Sometimes, you just have to “follow the money.”
    If the patient is living and coherent, I would think that a health professional would follow the wishes of the patient.

    Sometimes, the elderly are too socially and psychologically weak to fight against a controlling, aggressive, family member. Family dynamics and all. Fear of dying alone, without assistance at all.

    Doctors would go up to my father in law, who had had 3 major strokes and say “Do you want me to try to save you? How much do you want me to do?” I kind of liked that. Even if his son had the legal power of attorney, he asked the patient. My FIL, who was aphasic, would mumble “yes.” This put the decision on the patient, rather than anyone else.

    After all, it is HIS body, and he was not an “incompetent vegetable” like his second wife tried to declare him as.

    His second wife wanted him to “kick the bucket” as soon as possible so that she could inherit his house and car, and money, LOL.

    Fortunately, she had to wait as he wasn’t dead yet.

    • Dana

      “Sometimes, you just have to ‘follow the money’.”

      Sometimes, you just have to “read the actual post.”

      The niece is the one with money, dear — not the aunt.

      • Suzi Q 38

        Not really.

        Maybe you should read the actual post.

        The niece has money, no argument there.

        This is evidenced by the fact that she can send her a nurse.

        The source of her money that she sets aside for her aunt for the nursing care may be in question. It could be the aunt’s money.

        This is especially true if she is conservator or had POA of not only her aunt, but her assets as well.

        Oh, don’t call me “dear”….you sound too old.

  • leslie fay

    As a Respiratory therapist of almost 40 years I can vouch for the fact that the majority of time family members overrule a patients DNR. The reasons vary, frequently it’s about the money sometimes it’s about relationships but almost always it’s not about the patient. It’s about the person who is allowed to make the decisions. Even if they think they are making decisions out of love all they are doing is extending the patient’s suffering. It would certainly help if physicians actually told all involved what the likely outcome would be and what “doing everything” really means. If the patient is legally able to make decisions(and everyone should make these decisions in early adulthood) family should not be legally able to change the patient’s decision.
    I am just glad that my husband is also a therapist, all my friends are healthcare professionals and I have no children to override my decisions.

  • Guest

    It doesn’t over-ride a legal Power of Attorney, does it?

  • Sue Wintz

    If the patient is competent, the POA cannot force her to go to the hospital if she does not wish to, so that was the first mistake. The second mistake was not picking up on the unhealthy relationship between the patient and the niece and having someone – the chapain, the social worker – from the hospital talk with the patient about her wishes, asking if she was comfortable with the niece being her POA or if she wanted to name someone different. There might be a friend that no one knows about that she would feel more comfortable with. Finally, the third mistake was not getting adult services involved since there was clearly conflict between the wishes of the patient and the decisions being placed upon her by the niece that were clearly against her wishes, as well as the accusations being made by the niece about the patient’s grooming and living conditions. As a board certified chaplain, I remind the medical team always to look beyond the initial story to find out what else is going on in the background, and then mobilizing the resources to work with them. If I had been the chaplain who had gotten a consult or referral to see this patient, a conversation with the patient to gently address the issues would have been the starting place.

    • Guest

      “asking if she was comfortable with the niece being her POA or if she wanted to name someone different”

      It sounds like she was dependent for financial support on her niece, and giving her niece POA was a condition of receiving that support. The aunt made a choice. Maybe she’d rather be in this position than homeless and destitute.

    • Guest

      Read Dr. Reznick’s reply below: “The patient did not wish to risk losing the financial support of her only living relative and did not change her niece’s orders.”