Losing a patient to hospice

I lost another patient to hospice last week.

She was 49-years-old. Three years ago, she was diagnosed with stage 3 cervical cancer. She was treated with surgery and chemotherapy and went into remission and stayed there until she died. After the chemotherapy, she stayed anemic. She was weak, didn’t take care of her insulin properly and didn’t eat. Her kidneys slowly lost function because of her noncompliance, her HgA1c climbed to the teens and when she died her creatinine was 3.6. Her weight hovered around 85 pounds despite 800 mg of megesterol and 40 mg of Marinol daily.

Her metabolism was a mess. Her cholesterol was bad. She was a type I diabetic for 30 years. She had congestive heart failure, gout and malignant hypertension. She was depressed and separated for over a decade from her husband. She took enough narcotics to kill a midsized farm animal along with a stupefying amount of benzodiazepines to round out the toxic soup flowing through her. She was, however, reasonably pain free, mentally intact and capable of caring for herself as well as she ever did.

A couple of weeks ago, she was admitted to the hospital for rectal bleeding, caused by hemorrhoids from chronic constipation from the narcotic medication. After stabilizing her, the hospitalist decided that she looked terminal. She did. She was 85 pounds. She’d looked terminal for 2 years. He called in hospice, certified that she had 6 months left to live and sent her home to live out her days with her husband. Yes, that husband.

She went home, laid down in bed and never woke up again. The hospice crew discontinued all of her medications except insulin and placed her on sublingual morphine. The hospice nurse dutifully dosed her whether or not she was awake. When she stopped breathing, her family called 911 and she was brought to the hospital. Despite the usual computerized nursing triage note that stated that she was alert and oriented, she was dead on arrival. Her labs clearly showed failure to breathe as the cause of death.

In my state, hospice patients are not autopsied. By law. As a practitioner who is fairly competent at keeping patients with terminal illnesses alive past their due date while maintaining their mental function intact, physical function intact and pain controlled, the current practices of corporate hospice are a travesty. Palliative care rarely consists of removing all medications except benzodiazepines and narcotics and dosing somnolent patients until they are dead. That is euthanasia and should be called such.

Of course, neither I nor the family have any final say in this matter. Even though I treated the patient for years, the death certificate will be signed by the doctor of record, mainly because the attorney general doesn’t want to deal with me writing “homicide” as the cause of death.

“Tiredoc” is a physician.

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  • NewMexicoRam

    Wow.
    The lady was dying.
    You think you deserved to “treat” her so she could live another 5 days?
    Why not be appreciative of the 3 years you were able to treat her, and it appears, doing well at it?
    This focus on “doing everything” to gain a few more hours can actually be a disservice to the patient.

    • guest

      Actually a careful reading of the piece would reveal that the patient in question was not dying, as she was medically stable except for being admitted for rectal bleeding.

      • PoliticallyIncorrectMD

        Really! She did not eat, was cachectic and to author’s own admission looked terminal. If this is not dying, I don’t know what is. And it is irrelevant if it was her cancer (in remission?) or the anti cancer drugs that were doing that. I do not support euthanasia, but neither I support prolonging the inevitable (at the expense of patient), just because it makes the physician feel like he or she failed their mission. Can you possibly explain the need for checking HbA1c level and continuing routine medications on the patient who will not live long enough to experience the complications of her chronic conditions (such as hypertension) ten years down the line.

        • Mika

          She wasn’t dying of cancer, she was dying because she wanted to die – or at least didn’t want to live any longer.

          Should any citizen who decides they don’t want to live anymore be helped to their (premature) deaths by the medical system?

          These medicos helped to kill someone who was depressed, not someone who was terminally ill in any normal sense of the word. Is that a good thing?

          • PoliticallyIncorrectMD

            First, there is nothing in the scenario suggesting the diagnosis of depression or any attempts to treat it – unless, of course, you consider opioids, benzodiazepines and marinol to be the treatment for such.

            Second, since when the patient’s wishes are to be followed only if they make their physician feel good?

          • Tiredoc

            Depressed. Elavil, Celexa. I agree with you on your second point. The patient’s wishes are to be followed.

        • Tiredoc

          It is the hospital’s policy to check HbA1c level on all diabetic patients upon admission. Apparently even when they are dead.

          As for the continuing routine medications, she had congestive heart failure and was taking spironolactone and carvedilol. I am of the opinion that well-tolerated medication regimens should not be altered in the palliative setting. Unless, of course, you think pulmonary edema is…comfortable.

    • Tiredoc

      Other than narcotic overdose, please enlighten me on her terminal condition. Her cancer was in remission. Her type I diabetes? Her renal insufficiency? Her cachexia? Her hemorrhoids? Or perhaps we’ve become the Netherlands and accept depression as a terminal condition.

    • PoliticallyIncorrectMD

      C’mon ! She could have passed having appropriate HbA1c and HDL levels.

      • Tiredoc

        Total cholesterol, HDL, and LDL are included in the admit CMP at the hospital. HbA1c is mandatory on admit for all diabetics.

  • edpullenmd

    Your case outlines several problems with current medical practice. As more of us stop caring for our own patients in the hospital, physicians who usually have never met the patient assume their care while they are inpatients. Communication between outpatient physician and hospitalist while the patient is in the hospital is not the norm. A discharge summary is the usual extent of communication.

    Your statement that “the current practice of corporate hospice is a travesty” is itself a broad statement that is far from universally accurate. In my practice patients who are placed in hospice essentialy always ask me to be the physcian in charge of their hospice orders. Many of my hospice patients live far better and often much longer and lives than I had expected with usual non-hospice care.

    In the case you present the care you describe was far different from my observations of the hospice care I see being provided. I hope readers don’t accept your description as universally typical.

    • Tiredoc

      I am not advocating the elimination of hospice. I am advocating against the handing over of care to a corporation with a standard practice of care that is explicitly lethal.

      Sublingual narcotic administration to an unconscious patient with progressive dose increases regardless of mental function assessments will result in a dead patient, even a patient who starts off free of any disease.

      If someone wants legal euthanasia, fine. They can call their state legislature and advocate. Then they get informed consent from the patient and have at it. I won’t do it, but at least it wouldn’t pollute the waters of palliative care.

      From you response, it sounds like your experience is what hospice is supposed to be, adding quality to life. If the patient is sedated into insensibility, it’s not being done right.

      • edpullenmd

        It sounds like we are in agreement on how Hospice should be. My experiences have been nearly uniformly positive. Certainly not euthanasia

      • penguin50

        I am very interested in this notion of “corporate hospice.” If you or anyone else wishes to comment further, if only to offer a description of how such functions and how it might differ from other types of hospice, I would much appreciate it. (For example, are you making a distinction between private hospice firms and nonprofit ones?) I am at present a hospice patient myself. How could I tell if my hospice team is a “corporate” one or not?

        • Tiredoc

          I have never identified any functional difference between for-profit and nonprofit in a medical setting.

          I doubt that you have anything to worry about. You are in a position to specify how much care you want and how aggressive you wish to be.

          My beef with corporate hospice is more of a feeling than anything else. My first experiences with hospice were before it was a service paid by Medicare. For everyone we met, it was a labor of love.

          Now, for most of the hospice employees I meet, it’s a job. The interviews are a checklist. The staff, like everywhere else, is overworked. Because it is hospice, the only check on incompetence is the awake patient.

          Theoretically, corporations can run hospices well. I suppose it’s like anything else. If you get the same nurse and the same case worker, then you can say what you want.

      • querywoman

        I’m digesting your post and what happened is becoming clear to me. Unconscious, getting morphine that killed her. That’s probably what happened.

      • Carol

        “If someone wants legal euthanasia, fine. They can call their state legislature and advocate.”

        That’s all well and good, theoretically, but a nearly impossible battle.

    • http://onhealthtech.blogspot.com Margalit Gur-Arie

      “As more of us stop caring for our own patients in the hospital,
      physicians who usually have never met the patient assume their care while they are inpatients.”

      Why is that? How did this become an accepted fact of life (or death in this case)?
      Seems to me that if Tiredoc would have been there, or at the very least consulted before decisions were made, none of this would have happened.

      • PoliticallyIncorrectMD

        Agree completely. Aside from the merits of this particular case, If a physician is concerned with care his or her patients get in the hospital, perhaps they should admit their own patients. Unfortunately, it is much easier to criticize others than take responsibility.

  • azmd

    Corrrect me if I’m wrong, but I have generally been under the impression that euthanasia is something we employ only if the patient requests it. Which did not appear to be the case in the scenario described above.

  • PoliticallyIncorrectMD

    I was wondering, the opioids you are saying she was addicted to – was she getting them on the street, or was it component caring doctor who was prescribing them?

    • Tiredoc

      I prescribed all of her medications.

      • PoliticallyIncorrectMD

        Do you agree with Deceased MD’s assessment that your patient was addicted? Also, was she depressed?

        • Tiredoc

          She was physiologically dependent on narcotic medication. She had ample radiographically demonstrated pain generators, electomyographically confirmed diabetic neuropathy, atherogenic claudication as well as her post-oncological surgical neuropathic pain. She was a palliative care patient, not an addict.

          She was depressed. She was on Elavil (to cotreat the neuropathic pain) and Celexa.

          • PoliticallyIncorrectMD

            Do you think the reason for her cachexia was depression, or in fact her cancer “in remission” played a role?

          • Tiredoc

            Judging from the HbA1c, the cachexia was likely due to not taking her insulin on a regular basis.

  • Suzi Q 38

    I am sorry this happened, doctor.
    Maybe the patient conveyed that she had suffered enough.
    You said though, that she wasn’t in any pain.

    I hope the husband, who had not lived with her for 10 years, was not placed in charge of deciding her end of life care. Since she was not legally divorced, he probably was in charge, and she allowed it.

    Did she have children? If so, were they adults and did they have a “say” in the matter?

    At 85 pounds, she was probably so weak that she did not care.

    Sad.

    • Tiredoc

      She was 5 feet tall. She never weighed more than 105 in her entire life. With the Megesterol and Marinol, she had actually gained weight. Her lowest weight was 73 pounds,

  • penguin50

    I can speak only from my personal experience as a hospice patient. It seems that the standard procedures differ from program to program. The day I was admitted to hospice, I was assigned a new-to-me palliative medicine doctor. My oncologist now participates in my care only on an advisory basis and only if the hospice doctor contacts him. All of my orders without exception are signed by the hospice doctor. In fact, my hospice nurse made a special effort to transfer all of my meds to the authorization of the hospice doctor, in case she wished to alter the dosage.

    • Tiredoc

      That’s what it should be for everyone. For the most part, I write all of my patients’ medications. If I consult another doctor, they tell me what they think, but I write the medication. One doctor, one pharmacy, one patient.

  • Tiredoc

    Thank you. I agree with your recommendation for psychiatric hospitalization, that would certainly have addressed her non-compliance with her diabetes medication. Although pharmacologically dependent on narcotic medication, she was not addicted. Psychiatric hospitalization for narcotic dependence from pain is useless unless specific to pain patients. It’s easier and cheaper just to taper them off as outpatients.

  • Tiredoc

    In my opinion, the physician responsible for directing the hospice care should interview and examine the patient to determine the appropriate medical plan and personally ascertain the wishes of the patient and family.

    The current model of the discharging physician signing the hospice orders leaves the patient in the care of someone who has never met them. If the patient is unconscious, the caregiver can’t tell anything other than what was ordered.

    Ordered, I might add, in the same computer system that stated “alert and oriented” in the nurse’s physical examination of my quite deceased patient.

  • querywoman

    When my mother was terminal with lung cancer, hospice discharged her so she could have a tumor removed from her shoulder. Then promptly readmitted her.
    Her mind was failing at the end. My only surviving brother, who regards me as evil incarnate, put her in nursing home hospice for about 2 weeks, then got a hospital bed, and took her home to his house to die.
    I think she lasted about 2 days.
    I willingly stayed out of the arrangements, because they both believed in extreme measures to save life. I don’t.
    A nurse had told me that the morphine eventually kills the terminally ill. I’m not sure it did. I knew she was very close to the end at the last few days in the hospital.

    • Tiredoc

      It sounds like your mother was an entirely appropriate hospice patient. By definition, if morphine kills the patient it is euthanasia. Dosed properly, morphine does not kill.

      • querywoman

        And that the doctors and the hospice played the game properly: discharging her for the surgery, treatment to cure the end.
        I was quite satisfied with her oncologist and how her care went.
        Before my brother took her home, she had stopped eating much in the nursing home. A nurse told me she was getting ready to die.
        Your patient at least had one person who truly cared about her: you.

  • Tiredoc

    I would have to base the complaint on inappropriate evaluation of the patient prior to dosing the morphine. I would be expecting the board to overrule a licensed caregiver’s documented physical examination. Wouldn’t work.

    • PoliticallyIncorrectMD

      If the documentation suggests the medication was given appropriatelly, what is your basis for stating otherwise? Moreover, what exactly suggests that inappropriate dosing was intentional (i.e. euthanasia). If there are evidence to your statements, such actions should end up not only in malpractice case, but also in criminal liability. If there are no facts to support this, you should stop stirring the pot. Creating paranoia and mistrust, though may make you look like a hero in the eyes of some, does not help patients.

      • Tiredoc

        A bad plan faithfully executed is still a bad plan.

  • maggiebea

    And nobody at the hospital contacted the primary care doc? What in the world was THAT about? And doesn’t the patient have a say in whether to sign on to Hospice or not? This doesn’t sound at all like our family’s experience of Hospice – in Vermont and New Jersey, during 1998-2000; and in California a few years later.

  • disqus_qJEMXTKtR1

    As karen3 states, euthanasia is not legal in our country, but there is a role for it as an option for our patients. Implementing this role though will require long discussion amongst all involved, but should not be profit based.

    Gene Uzawa Dorio, M.D.

    Santa Clarita, CA

  • DoubtfulGuest

    I’m so sorry, karen3.

  • PoliticallyIncorrectMD

    I never stated I support euthanasia. What I do consider appropriate is providing treatment aimed to minimize suffering to those consenting patients who are dying, even though the treatment side effects can shorten their lifespan. As physicians, society (meaning YOU) places us in a position to ascertain the outcomes of peoples medical conditions and frequently speak on behalf of those who are unable to do so as to what the best course of medical treatment should be. May I add that while we are not infallible, most of us perform this taxing duty to the best of our ability, without regard to compensation and public criticism and always having patients’ best interest in mind.

  • Tiredoc

    It’s a negative check-off. Ordered unless specifically excluded. It’s part of the hospital’s quality criteria push for Medicare reimbursement. It’s run off of the same purple top as the CBC.

  • Tiredoc

    You are giving a description of precisely the problem that I have with corporate hospice. The chaplain, social worker, aide, volunteer, family and patient have absolutely no training whatsoever in safely dosing narcotic medications. As a rehab doctor, none of the corporate hospices in town will accept me as the physician of record.

    Few primary care physicians have any training or experience in dosing narcotic medications to sedated patients. One local medical director for all of the hospice patients implies a doctor that reviews charts, not examines patients.

    There are very specific guidelines to safely dosing narcotic medications in patients who are not on hospice. How much to give and when to give it depend on the specific metabolism of the drug and the mental status of the patient.

    Unless the hospice nurse carries an EEG, the only truly objective measures available to assess pain in an unconscious patient are blood pressure, heart rate and respiratory rate. Otherwise, the assessment is entirely subjective on the part of the observer. A delirious or euremic patient will frequently demonstrate vocalizations and body movements indistinguishable from discomfort despite no perception of pain.

    I have seen very little effort on the part of corporate hospice to create an atmosphere of narcotic safety. Instead, I see a systematic removal of physicians and caregivers with experience in safely dosing pain medication in favor of internists and family practitioners supervising nurses by phone and by fax.

    The point that I am trying to make is that there is an insufficient level of safeguards in place to prevent patient demise by narcotic overdose. The dramatic increase in the use of sublingual narcotic medication on sedated patients is a relatively recent phenomenon. As a physician with a great deal of experience in both inpatient and outpatient dosing of narcotic medications, I believe that the practice is becoming euthanasia by incompetence.

    • Michele Turbin

      I do not believe I ever implied that the chaplain, social worker, aide, volunteer, family or patient was dosing narcotics.

      My problem with your complaint is the distinction between for profit and not-for-profit hospices. Do the not-for-profits dose narcotics differently? Do they not have a team consisting of a chaplain, social worker, etc.?

      While I do not believe that hospices dose narcotics unsafely, why are you singling out corporate hospice?

      As I stated earlier, I have worked for both. The ratio of patient to Medical Director was actually much worse in the not-for-profit. This particular hospice is actually owned by a hospital. The number of “hospice appropriate” patients discharged by this hospital and their hospitalists to their own hospice is staggering.

      I believe your anger should be placed, if anywhere, with the hospitalist that discharged to hospice as you feel that this patient was not “hospice appropriate.” I understand that, as a rehab physician, you were not given the opportunity to be the attending physician.

      The corporate vs. not-for-profit is not a valid argument when it comes to care. We both have Medical Directors that are Hospice and Palliative Care credentialed and follow guidelines for dosing narcotic medications. All make regular face to face visits with the patients. However, I can say that the vast majority of our patients are followed by their primary care physician. I believe this is where you feel that hospice lacks.

      I understand that you feel the internist or family practice physician may not be competent in dosing narcotics to those that cannot respond adequately. I do not understand how the tax filing status of the hospice has anything to do with this.

      With your line of reasoning,should I only trust my care to not-for-profit physicians?

      • Tiredoc

        You are correct. There is no functional difference between not-for-profit and for-profit health care. As you stated previously, it’s just a tax filing status.

        I will also agree that hospital run hospices are typically worse fully independent entities, if for no other reason than hospice is always on the losing end of the shared staff equation.

        By corporate I mean the separation of the makers of protocol and plan from those that deliver the service. Standardization and compartmentalization of duties is for hamburgers, not hospice.

        I’m not objecting to my patient being placed on hospice, I’m objecting to her being dosed with narcotics while asleep until dead.

        Because the dosing of sublingual narcotics is now a standard hospice practice, I am also objecting to the lack of safeguards to prevent inadvertent or malicious overdose.

  • Tiredoc

    Thank you for your comprehensive response. The reason I am not pursuing legal action is that I have no reason to believe intent, and I believe that the patient received the treatment she requested. As you stated, the fact that she agreed to go home with the relative least likely to halt over sedation speaks volumes about her motivation.

    I would request that you consent to be cloned, so we can have more hospice directors with brains.

    The nice thing about CHF patients is they’re tachypneic in distress. That’s an objective number. Matched with an appropriate time between dose changes, there is minimal risk to toxicity.

    Although there is no such thing as a maximum narcotic dosage for everyone, the maximum for the patient can be and should be determined in all patients, specifically to prevent inadvertent euthanasia.

    As for the living past their due date, they aren’t my dates. I find the dates both arrogant and ridiculous. I just go by what the oncologist, cardiologist or pulmonogist tells the patient. I will admit to some measure of pride in my patient’s fight. Her oncologist told her she had 6 months to live 2 1/2 years ago.

    She was my patient for seven years. I fought for 3 years to keep her going. I just wish it wasn’t the giving up that did her in.

  • http://www.myheartsisters.org/ Carolyn Thomas

    Does anybody else see this as a quality of life issue?

    This woman’s quality of life seemed perilously close to non-existent – as any patient who’s endured “rectal bleeding from chronic constipation” (caused by the opioids that you yourself were prescribing for her, Tiredoc) can clearly attest. And where was the Rx for her stool softeners that always accompany narcotics? This poor woman’s story seems to be far more about a lack of awareness of what “suffering” looks like, than about euthanasia. She was very clearly telling all who cared for her her own preferences through her non-compliance, weakness, refusal to eat – yet it seems few were paying attention to her suffering until she got moved to hospice care.

    Keeping your patient “pain free, mentally intact and capable of caring for herself” is not the same as keeping your patient wanting to stay alive. And priding yourself on “keeping patients alive past their due date” reminds me of the old nurses joke:

    Q: Why do they put nails in coffins?
    A: To keep the oncologists out.

    Such black humour reinforces reality: that kneejerk “one more round of chemo!” chorus that insists if we just keep pumping more drugs, more interventions, more treating the numbers instead of treating the declining, depressed, suffering human being, it’s called successful medicine. And to refer that human to end-of-life care is considered “losing” that patient.

    As a person living with chronic heart disease, I sure hope no heroic doctor feels compelled to brag some day about wanting to keep me alive “past my due date”. No truly sick person wants that.

    • Tiredoc

      I am not an oncologist or a surgeon. i do not prescribe chemotherapy. Effective pain control has been demonstrated to increase life expectancy in terminal patients.

  • Tiredoc

    Her weight had increased on Megesterol. She was non-compliant on the Marinol. Unfortunately, as she was also non-compliant on her insulin, the increased caloric intake was worsening her diabetes. Her gastroparesis from the diabetes on top of the narcotics caused the constipation, which was refratory to multiple laxatives.

  • Tiredoc

    Your experience may be different than mine. I have no reason to question either the dedication or motivation of you or your compatriots.

    It is standard hospice practice to dose unconscious patients. Determining the sedation level of an unconscious patient is not easy.

    Unlike other fields of medicine, the death of a hospice patient is not necessarily a negative outcome.

    What checks do you know of in hospice that I am missing?

  • Tiredoc

    I do not believe that hospice nurses are more trained or skilled at assessing safe doses of narcotic medications than nurse anesthetists, but they function in similar roles with unconscious patients. As there is no ability for the system as a whole to detect the difference between overdose and natural demise, such detection does not occur.

    The blanket of harm that is placed on your profession is self-imposed. You accept the responsibility of managing highly variable medications but bristle at the observation that there should be safeguards to detect either incompetence or malice. Incompetence can be retrained, but a single widely publicized case of malice by one nurse will force safeguards from the outside.

    I agree that waiting until the last minute to call hospice is shameful. When I do call hospice, my patients are awake and at home.

  • Tiredoc

    CMS has Hospice in their cross-hairs for next year. I expect many of the corporate hospices to go away. The approach by CMS appears to be to encourage hospital-owned hospices that specialize in the one week to grave after discharge model that I so object to, rather than the historical months of caring of the original hospice model.

    Hospice is going the route of acute rehabilitation. 20 years ago, acute rehabilitation was a months-long affair. In modern rehab, you’re lucky to get a couple of weeks for a stroke before you’re booted out the door. Most of the acute rehabilitation units are now tiny wards in hospitals, with staff dispersed throughout the system.

    If the hospice community doesn’t start to raise the alarm about the discharge and die cases, there won’t be anything left of their profession but dishonor.

  • Tiredoc

    I agree. Paying for Hospice by CMS was a mistake.

  • Tiredoc

    There’s something wrong with any system in which the supervisor asks the assistant what to do.

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