Why families and advocacy groups accept the torture of dying patients

by Aroop Mangalik, MD

A man has lung cancer that has spread to the brain. The cancer in the brain has been growing despite full dose radiation. His lungs have failed and he has been on a respirator for 10 days with progressive worsening of lung function.

Despite multiple discussions between the doctors and the Intensive Care Unit’s team with the family, they do not accept the doctor’s advice to let the patient die in peace. There is no possibility that the patient’s cancer in the brain or his failing lungs will improve. The medical team is continuing a treatment that will not work except to keep his heart beating for a few more days and some oxygen will be provided to the body until his lungs fail completely. The doctors and I.C.U. team are providing futile treatments.

By all medical standards, they are doing something that will not work. They are allowed by law and by accepted medical standards to stop the treatments and provide comfort care to the patient. Why is it that the doctors do not stop the treatments which they know will not work, will not help the patient or the family and are stressful, even traumatic for the staff in the I.C.U.?

One big reason is that the current social environment is one of giving a lot of importance to autonomy of the patient/family. Autonomy to refuse treatments is accepted and is an improvement over the forced treatments that were common just a few decades ago.

Yielding to autonomy that leads to demands for unreasonable/futile/unworkable treatments is not the same. The assessment that the treatment will not work, in cases similar to that described above, is based on solid evidence. It is an independent assessment made by multiple professionals after due deliberation. Yet the treatment is continued only because the family asks for it to be continued.

It is worthwhile to look into and try to understand why such demands are made by families (in most cases when the patients are that seriously ill, they are not in a position to make informed decisions).

One of the statements made by the family is that the patient wanted “everything” to be done to keep them alive. This, on the face of it, goes along with the general principle of an advance directive and patient autonomy and should be respected – as far as it goes. Problems arise when there is uncritical acceptance by the medical professionals of the statement as given by the family. It is not possible to accurately interpret the phrase “try everything”. No person, even medically trained persons, can gauge the complexity of the actions that are required when body functions are severely impaired. These are step by step decisions and actions and have to be made by specialized professionals. The nuances, the changing circumstances and the body’s response are complex and dynamic. They often reach a point when the damage to the body is irreversible. Thus, “everything” has limits, limits that can only be determined by highly trained and experienced professionals. The patient’s advance directives should be respected but physiological reality must be understood and yielded to.

In the same vein, family members say that the patient was a ”fighter” and did not want to give up. This again is a generalization and often an interpretation by the family. Accepting reality is not a defeat but accepting the inevitable. A common statement is a mix of thoughts. It manifests in different ways and is a combination of hope and denial of reality. Some will say you doctors are wrong, you don’t know everything and we are hoping for improvement. Yes, doctors do not know everything and doctors have been wrong. “Certainty” has many levels. One way to look at it is to think of what we say when we part from our friends, family or co-workers. We say to our partner, as we go to work “See you in the evening” or to our co-workers as we go home “See you in the morning”. Sometimes that does not happen. But we maintain a certainty in our statements. We don’t say “See you in the morning unless I have an accident on the way home”. Yes, mistakes have been made and a rare patient may do better than predicted by the health care team. In the circumstances described in the case above (it is a real patient where I was involved in his case) there was “absolute” certainty. This was based on medical and biological facts and the assessment by multiple professionals who have seen many similar cases. Thus here there is certainty. A certainty that has to be accepted to provide the maximum comfort to the patient.

The related statement about hope is more difficult to deal with. Hope comes from multiple sources. Wishful thinking is to me a major reason for hope. The two are difficult to separate. We must be sympathetic to hope and wishful thinking, we must understand that for the family, this is reality. Often religious beliefs are added to strengthen hope and make the wishful thinking seem real and generate a feeling of certainty for the family – certainty that the patient will recover, but this should not be allowed to overshadow reality.

Societal issues also come into play. There are a variety of advocacy groups who state that patients are allowed to die, indeed some say they are “killed” by doctors, because of something in the patients’ background. The most vocal of these groups are those that advocate for the disabled. They suggest, even aggressively make the point, that doctors withhold treatments from the disabled because they are disabled. They ignore the basic fact that even the disabled get to the point when the body cannot function with or without medical intervention. The outrage expressed by these advocacy groups affects the thinking of the public at large. Race, socioeconomic status, age for example are perceived as reasons why doctors withhold treatments. This zeal distorts thinking and unrealistic expectations arise. This brings out demands for treatments that, in the considered analysis and judgement of the professionals, will not work. “Will not work” has many levels. The patient’s lung and heart and other vital functions will not be sustained except through intensive medical interventions. The primary goal of the medical team is to have a self sustaining body. If that is not feasible, then that intervention should be stopped. There are exceptions of course. If the family wants the patient “alive” until another friend or family member who is away can come to see the patient, that is different. Just to keep the heart beating by artificial means is a goal that is not acceptable to most medical professionals. The discussion and clarification of the implications of such goals is an important part of the process. Religion, faith and belief in god is another factor which some into play in these end of life situations. The way these are dealt with will vary with the “faith” of the medical team. However, it is clear that the chaplains, priests and other religious “professionals” understand death, it’s inevitability and usually advocate comfort measures in situations like the one described above. Their input to help resolve such conflicts is valuable. Death is inevitable, it is also irreversible, therefore, it brings out in many of us, a rational irrationality. We do not know how to deal with that kind of finality. For a variety of reasons our society does not know how to deal with death. Our response is to deny it, postpone it or blame it on others.

As medical professionals, we need to be kind, sympathetic and understanding. But we have to be firm and must guide the family through the goals, the reality and take them towards a rational understanding of what is happening to the patients body.

Ultimately, I feel that medical professionals, after due analysis and consensus, should have the responsibility and authority to stop the treatments they know are only prolonging the process of death, and provide a good death to patient and comfort to the family.

Aroop Mangalik is a Professor of Medicine at the University of New Mexico Cancer Center.

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  • Theresa

    I have been in these situations with my own family and as a employee of an (OPO) organ procurement organization. It is so multifaceted that there is not one answer. Many times I found it was the lack of communication on the doctors part to keep the family informed. Why and what the testing they may be conducting on the patient. Not taking the time to explain the extent of the disease or injuries in simple terms so the family can understand. A great example of this is, doctors not telling the family that they are doing brain death studies, then walking in and declaring the patient dead. Just imagine the average person having their family member declared dead and they still see them pink and breathing on the vent. This happens a lot. Mostly because the doctor is uncomfortable discussing this with a shocked and terrified family.

    Also there are so many cultural and religious differences. This is where a outside patient advocate may be an answer. Someone who listens to the family and interprets what is going on, and someone who does a lot of hand holding. The ED or ICU staff usually knows who these families are and can alert the doctor.

    What needs to happen is clear, compassionate communication to the family members. Talk in terms they can understand, show the imaging, draw a picture, offer a hug or a squeeze of the hand to show you care and once the support has been withdrawn do not rush them. Let the family, help bath and prepare the body before it leaves the room. Let them accept the death even before it happens.

    Just my opinion…..

    • Aroop

      I agree clear, compassionate communication is key. In the type of cases I cited, this was done many times AND there was absolute certainty of progression of disease and death over a matter of days. But we were forced to keep the ventilator going.

  • Marina

    There is an important factor not mentioned in the piece. It’s something that a sizable number of people have strong feelings about, but that doctors naturally do not.

    Some people have a visceral fear and/or hatred of hospitals. They fear being a patient. They hate being a visitor. The sights, sounds, smells, and vibe are too much to handle.

    Try to imagine what feels like for those people to know that their own or their loved one’s last days will be spent in someplace they hate. Where do you really hate being? What’s one place, anything you can think of, that scares you the most? Imagine someone talking you into spending time there.

    It’s not the people in the hospital, it’s the place itself they don’t want to be in. Dying at home or in a hospice is a perfectly understandable choice.

    • Aroop

      I agree hospice and peaceful death at home is a good thing. However, the patient and family have to agree to that and, of course, accept that is inevitable.

  • Ellen M Martin

    The headline says something not picked up in the otherwise excellent post. Futile, life-prolonging treatments are torture to the patient. My elderly mother-in-law was intubated in ICU once for life support during her penultimate bout of sepsis. She refused to allow it a second time it was so painful. I don’t think this side of the situation is fairly and accurately presented to relatives, who have no idea how much their dying loved one is suffering.

    • Aroop

      Thanks for your support. I avoided the word in the text because I did not want to sound hyperbolic.

  • Hexanchus

    This is why I have a POLST, an Advanced Directive that extensively itemizes my specific wishes regarding treatment and severely restricts which decisions the PR may make if I am not in a condition to make my own decisions, and a provision in my will that disinherits any family member that attempts to go override any of the provisions of either of the first two.

    • Aroop

      Yes, POLST is a good idea, but many people are in denial.

  • buzzkillersmith

    This is becoming less of a problem. When I started in 1989 families and pts demanded much more futile care than they do now. Give it time, Dr. M.

    • Aroop

      You may be right, but it is still a problem.

  • http://advocateyourself.org Cheryl Handy

    In the environment of some hospitals and clinics (where hospitalists refuse to communicate with patient’s treating clinic physicians), people better be careful telling this family member and patient advocate that it is the advocacy groups or family members that allow dying loved ones to have a tortured death.

    While caring for my dad 2007-2010, I was told by multiple hospitalists (most FMG who did not understand the culture of a daughter giving up her professional life to care for her ill father) that I should place my dad in a nursing home because, according to the hospitalists “you have a life too.”

    The most offensive example was in 2007 when, in fact, my dad had nothing more than an upper UTI. The hospitalist refused to contact dad’s treating urologist (everyone was from the same facility – Duke in Durham NC). I called the urologist, Dr. Brian Evans, from dad’s hospital room. Dr. Evans was devastated that no one from the hospital called him to advise that his recent surgical patient was admitted.

    Dr. Evans told me that often times the only (emphasis on *only*) presenting condition for an elderly man with an upper UTI is “mental confusion.” And that was the only symptom dad had at that time. Dad had just undergone very successful surgery for colon cancer 6 months earlier and everything looked great! Dad was not even on chemo at that point. Dad was status post a prostate reduction. (Neurologists and psychiatrists tested dad’s head and brain – no Alhzeimers, no dementia according to the all the tests, scans, etc.)

    The urologist Dr Brian Evans told me that if I had listened to the hospitalist, dad would be placed in a nursing home, he would be cathed for the convenience of the nursing home staff. Dad would continue to be “confused” and have an untreated UTI that would eventually end up in his kidneys and he would die. Dr. Evans told me to take dad home and I did. God bless Dr. Brian Evans.

    No one at the hospital would check for urine cultures because dad only had “confusion.” Despite the clinic physician’s request, one hospitalist just performed a urine dip-stick because “it is cheaper and my job is to save the hospital money” and “clinic physicians don’t tell us what to do in the hospital.”

    That lack of communication continued:

    (1) Dad began chemo in September 2007, suffered horrible 5FU sores.
    a) Dad’s oncologist admitted dad to the Duke hospital for 3 days IV antibiotics.
    b) I happened to be on a business trip those 3 days. When I returned, dad had the same dressings that I applied prior to the admission and the hospitalist said there was no reason for antibiotics.
    c) Dad was discharged on a Thursday in horrific pain and weak.
    d) I took dad to the oncologist’s clinic office the following day (a Friday) and the oncologist was horrified at dad’s condition and the fact he had no antibiotics.
    e) I returned dad to the oncologist’s office the following Monday. He was admitted to the hospital with severe pneumonia.

    (2) Duke hospital radiologist emailing oncologist to say there is a very small liver spot we should ablate in Feb 2008 BUT that email never making it to the Duke clinic records

    (3) Because the Duke hospital radiology email was not charted, neither oncology or orthopedics thought there was another cancer issue and, therefore, dad was cleared to have a bone fusion in Feb 2008. Generally chemotherapy patients or potential chemotherapy patients would not have orthopedic surgery because chemo interfers with bone healing.

    (3) Because Duke hospital radiology never properly charted the email so that the information was properly communicated to oncology or orthopedics, a routine scan in early Summer 2008 revealed that once tiny liver lesion (capable of being ablated) was now large and dad needed chemotherapy

    (4) As it had done in Fall 2007, the 5FU chemotherapy caused sores all over dad’s body and put dad back into Duke Hospital in August 2008. Again, despite my best efforts (and telephone calls to both the oncologist and orthopedic surgeon), the hospitalists literally refused to communicate with oncology or orthopedics. A sore over the spot of dad’s fusion worsened. Duke said they did all they could for him. Dad was discharged in such bad shape that I got an ambulance to take him home.

    I begged the orthopedic surgeon to see dad in October 2008 and osteomyelitis was diagnosed. Dad spent 2 weeks in the hospital. The surgeries were intense and left dad with a long road to recovery. Dad was cathed at the hospital and left with another UTI. ALthough the orthopedic surgeon ordered urine cultures due to dad’s history of serious and upper UTIs, the hospitalist said no. Once again, I was told by the Duke hospitalist that his job was to save the hospital money. I took dad to his clinic urologist (Dr Brian Evans) after that discharge and before we even returned home. Indeed, dad had an upper UTI that required attention.

    After the discharge, dad was followed for a very short while by the Duke Infectious Disease Fellow (Dr. Anna Person) that saw him in the hospital for osteomyelitis. But Dr. Person left Duke Medical in late January 2009. Even though blood work ordered by Duke ID specialist Dr. Sexton showed there was still an infection, dad was released (prematurely) from the infectious disease service. It seemed that when Dr. Person left, there was no plan for dad’s care. I strongly questioned the decision to stop antibiotics for dad’s osteomyelitis. But, I was ignored.

    The orthopedic surgeon needed to fix dad’s foot (that was rebuilt after the osteomyelitis surgery in November 2008). He did this with an external fixator. The orthopedic surgeon presumed the infection was gone.

    Dad would not be able to have any further chemo for the liver lesion (that should have/could have been ablated in February 2008) until and unless the foot bone was healed. Chemo interferes with bone healing.

    My dad tried mightily. The orthopedic surgeon (Dr. Mark Easley) encouraged dad to weight bear more so that the bone would heal. Dad went to PT and exercised at home. As late as October 2009, the bone still was not healing. Dr. Easley did not know why. And there was no plan for dad other than – he is not trying hard enough – he needs to weight bear more!

    My dad was devastated. He kept trying to exercise and he was in constant pain. On January 2, 2010, dad walked outside to get the newspaper and fell down.

    After I cleaned his face, applied butterfly strips above his eyebrow and made sure he was oriented and not acutely injured, I called, emailed, sent photos of what dad looked like and begged Duke for help. Orthopedics (Dr. Mark Easley) and oncology (Dr. Michael Morse) ignored me.

    Finally on 1-13-2010, I contacted Duke Risk Management and asked why no one would call me. Duke oncology called later that same day and said that dad would be fine. I should just bring him to his next appointment in Feb 2010.

    Two days later on 1-15-2010, my dad died at home in his wife of 55 years arms. I asked for an autopsy. It turns out that dad still had the osteomyelitis. Duke infectious disease service should have never released him.

    Tortured? Because myself as his advocate or my mom were trying for some heroics to keep the man alive? Hardly.

    No human being should ever suffer as my dad did because of hospital politics, petty ego and turf wars or plain failure to pick up a phone and say “What’s up with your patient? He was just admitted to the hospital.”

    • Aroop

      Your experience with your father’s illness and death sounds awful. I presume you have the Duke administration know about your experience. Re: DNR, I cannot speak for everyone, but I know that at our hospital, a DNR order is taken very seriously and much discussion is held between doctors before the patient and family are approached with that question. Further discussions are held to explain the situation.
      The reason is that futile CPR attempts are torture.

  • http://advocateyourself.org Cheryl Handy

    Give the state of medicine today, I would never recommend that families or patients allow DNRs or “no Codes.”

    Go with your gut, families. You know your loved one better than any doc. No one will ever care for your loved one more than you. We aren’t at rationed medicine *yet*.

    Do not allow medical staff to guilt you into any decision about yourself or your loved one. Please

  • Theresa

    Hate to say it but, I too experienced hospital politics. At a NCI center in MI my father was told that nothing could be done and the only suggestion was palliative care. Come to find out the co-inventor of Bexzaar was the Lymphoma Chair and it was not offered. We went to the other NCI center down the road and got treatment, and he lived much longer than expected. Plus, luckily for him he passed from a heart attack rather than what would of been a very painful death.
    I really wonder how much of the cultural/hospital/ political/administrative background of the doctor plays into futile treatment calls? ( I believe it’s a lot)

    • Aroop

      I do hope only medical issues are considered when DNR discussions are held.

  • http://www.stampandchase.com Burl Stamp

    Dr. Mangalik has captured well the complexities and nuances of difficult decisions at the end of life. The circumstances he describes happen all too often, but I have also seen and personally experienced situations where the family is ready to allow the patient to die in a peaceful, respectful way but doctors are reluctant to let go.

    Regardless of the specifics, open communication with an exceptionally high degree of trust is essential to navigating these circumstances successfully. Especially in today’s highly specialized, often fragmented environment, the need for a well-established “medical home” and relationship with a trusted primary care physician has never been greater.

    If we want to change the conversation and be most helpful and compassionate to the patient and family, we need to worry not only about what we are trying to convey but more importantly who is engaged in dialogue with the family. The message, “It is time to let Dad go,” comes much better from the trusted family physician than from an intensivist, hospitalist or consulting specialist who may not have had the time – or frankly the incentive – to develop a long-term relationship with the family.

    In end-of-life situations, a well-established discharge communication strategy back to the primary care physician isn’t sufficient … or even relevant. To deliver true patient/family-centered care, we really have to find ways to leverage trusting relationships that have been forged in less stressful times. This usually means the primary care physician must be actively involved in the dialogue, not just kept informed sporadically during milestones in the acute care journey.

    • Aroop

      So true. I agree. Yes, some doctors do not want to let go, but on the other hand, some families just don’t accept death as being inevitable.

  • Marc Gorayeb, MD

    A small window into the intense and complex realm of terminal illness. Not as ripe for palliative care and cost savings as the govt. bureaucrats would have you believe, is it?

  • Penny

    Ooh, wow. I remember reading a Reader’s digest article year ago about someone in Holland (I believe) whose father was dying. They asked if the doctor could do away with him earlier because they wanted to go on a holiday and if he was going to die two weeks later, why not then? I can’t remember the end result.

    But I myself have spinal degeneration and that can be painful. I have bought equipment to do away with myself peacefully when the pain gets too great for fear I may be tortured for a long time in a hospital, but would I have the courage to use it, and would I want doctors to put me down?

    Actually the latter seems like the best solution, although I wouldn’t want them to withhold pain killers, food, or especially water. What a panic the body might to into if deprived of these things. Even watching them put down a cat with uthenol after using phenobarbital almost made me faint from horror. The cat became extremely lively and panicked horribly, licking her lips for 15 minutes after the phenobarbital was injected, so I pleaded with the vet (who always leaves patients in the room afterward alone with the cat to watch it die), to please rush in and give her a second phenobarbital shot! It took her another 3 minutes to settle down enough after that that so she wouldn’t feel the uthenol. .

    If they defiinately knew that a patient wouldn’t feel pain, I suppose that’s the way I would prefer to go, especially at an older age, but with better sedatives. The young, however, may wish to stay alive longer.

    Then again, what do you do with people in a coma? A number of them have come alive year afterward.

    And if a patient were to be put down by a doctor, would this be the doctor’s decision alone, or would a whole hospital board have input? Again I would prefer the latter.

    Maybe if doctor are “sure” patients won’t come back and the family wants to keep them alive, the billing should be directed to the family at that point. (It probably is, in the USA, but not in Canada).

    Then again, as someone mentioned, I do think that more lower income people would be put down than higher income people — many many more!

  • Aroop

    In the U.S. “mercy killing” is not allowed. Oregon does allow Physician Assisted Suicide. In that process, the patient initiates the process. The doctor only prescribes the drug. Then the patient takes the drug entirely by themselves. The Dutch scenario is not possible here.
    The predicament of gradually progressive disease is very difficult.

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