The downward spiral of the stubborn patient

Over the years that I’ve worked in acute inpatient rehab centers, I have been truly vexed by a particular type of patient. Namely, the stubborn patient (usually an elderly gentleman with a military or armed forces background). I know that it’s not completely fair to generalize about personality types, but it seems that the very nature of their work has either developed in them a steely resolve, or they were attracted to their profession because they possessed the right temperament for it. Either way, when they arrive in the rehab unit after some type of acute illness or traumatic event, it is very challenging to cajole them into health. I suspect that I am failing quite miserably at it, frankly.

Nothing is more depressing for a rehab physician than to see a patient decline because they refuse to participate in activities that are bound to improve their condition. Prolonged immobility is a recipe for disaster, especially in the frail elderly. Refusal to eat and get out of bed regularly can make the difference between life and death within a matter of days as leg clots begin to form, and infectious diseases take hold of a body in a weakened state. The downward spiral of illness and debility is familiar to all physicians, but is particularly disappointing when the underlying cause appears to be patient stubbornness.

Of course, the patient may not be well enough to grasp the “big picture” consequences of their decisions. And I certainly do not pretend to understand what it feels like to be elderly and at the end of my rope in regards to prolonged hospital stays. Maybe I’d want to give up and be left alone too. But it’s my job to get them through the tough recovery period so they can go home and enjoy the highest quality of life possible. When faced with a patient in the “wet cat” phase of recovery (I say “wet cat” because they appear to be as pleased to be on the rehab unit as a cat is to being doused against their will), these are the usual stages that I go through:

1. I explain the factual reasons for their admission to rehab and what our goals are. I further describe the risks of not participating in therapies, eating/drinking, or learning the skills they need to care for themselves with their new impairments.

2. I let them know that I’m on their side. I understand that they don’t want to be here, and that I will work with them to get them home as soon as possible, but that I can’t in good conscience send them home until it’s safe to do so.

3. I give them a projected discharge date to strive towards, with specific tasks that need to be mastered. I try my best to give the patient as much control in his care as possible.

4. I ally with the family (especially their wives) to determine what motivates them, and request their presence at therapy sessions if that seems fruitful rather than distracting. (Helpful spouse input: “Mike only wants to walk with me by his side, not the therapist.”)

5. I ask loved ones how they think the patient is doing/feeling and if there is anything else I can do to make his stay more pleasant. (Helpful input: “John loves ice cream. He hates eggs” or “John usually goes to bed at 9pm and gets up at 4am every day.”)

6. I meet with nursing and therapy staff to discuss behavioral challenges and discuss approaches that are more effective in obtaining desired results. (For example, some patients will always opt out of a task if you give them a choice. However, they perform the task if you state with certainty that you are going to do it – such as getting out of bed. “Would you like to get out of bed now, Mr. Smith?” will almost certainly result in a resounding “No.” Followed perhaps by a dismissive hand wave. However, approaching with a “It’s time to get out of bed now, I’m helping you scoot to the edge of the bed and we’re going to stand up on 3. One, two, three!” Is much more effective.)

7. If all else fails and the patient is not responding to staff, loved ones, or doctors, I may ask for a psychiatric consult to determine whether or not the patient is clinically depressed or could benefit from a medication adjustment. Typically, these patients are vehemently opposed to psychiatric evaluation so this is almost the “nuclear” option. Psychiatrists can be very insightful regarding a patient’s mindset or barriers to participation, and can also help to tease out whether delirium versus dementia may be involved, and whether the patient lacks capacity to make decisions for himself.

8. If the patient still does not respond to further tweaks to our approach to therapy or medication regimen, then I begin looking for alternate discharge plans. Would he be happier in a skilled nursing home environment where he can recover at a slower rate? Would he be amenable to an assisted living or long term care facility? (The answer is almost always a resounding “no!”) Is the patient well enough to go home with home care services and round-the-clock supervision? Does the family have enough support and can they afford this option?

9. At this point, after exhausting all other avenues, if the patient is still declining to move or eat or be transferred elsewhere, some sort of infection might set in. A urinary tract infection, a pneumonia, or bowel infection perhaps. Then the patient becomes febrile, is started on antibiotics, becomes weaker and less responsive, and is transferred to the medicine floor or higher level of care. Alternatively at this phase (if he is lucky enough not to become infected) the patient might have a cardiac event, stroke, blood clot with pulmonary embolus (especially if he is a large man), kidney failure, or develop infected pressure ulcers. Any of which can be cause for transfer to medicine. In short, if you stay in the hospital long enough, you can find a way to die there.

10. After much hand-wringing, angst, and generalized feelings of helplessness the wives and I review the course of events and ask ourselves if we could have done anything differently. “If I had acted like a drill sergeant, do you think he would have responded better?” I might ask. “No dear, that would only have made things worse.” She’ll reply. I’ll see how disappointed she is in his deterioration, staring off towards pending widowhood, engaging in self-blame and what-ifs (e.g. “If we had only had more money perhaps we could have taken him home with 24 hour nursing care until he was better …” “If I had cooked all his meals, maybe he would have gained enough strength to avoid the infection …” etc.) I try to be reassuring that none of this would have made a difference, myself reeling from the failure to get the patient home.

This 10 step process happens far more often than I’d like, and I certainly wish there were a way to head off the downward spiral with some kind of effective intervention. Would it help to have a volunteer unit of ex-military peer counselors in the hospital who could visit with my patients and help to motivate them to get better? (Operation “wet cat” perhaps?) Should I change my approach and put on my drill sergeant hat at the earliest stages of recovery to force these guys out of bed? Can educating younger law enforcement and military workers about illness help to prepare them to be more compliant patients one day?

I don’t know the cure for stubbornness, but it sure leaves a lot of widows in its wake.

Val Jones is founder and CEO, Better Health.

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  • GT

    I wondered that myself. Maybe, after a lifetime of being in control, they’re not willing to suddenly give up all control and become the submissive, they would rather go out on their own terms than face the last few years of their lives being treated like a retarded child.

    • M.K.C.

      You have described someone exactly like my grandfather. Unlike the the NPs and other allied health professionals who try to condescendingly “jolly him along” as though he were a willful kindergartener, we in his family love him and respect his judgment and decisions.

  • Shirie Leng, MD

    Dr. Jones – rehab medicine is tough, kudos to you for being so persistent, patient, and thorough. I kind of agree with NormRx but I also think that the ultimate responsibility for health resides within the individual. Good luck to you!

  • J.L. Creighton

    “Many of the male veteran elderly suffer from some sort of ptsd.”

    Do you have a citation on that?

    • Pat Brown

      Hence the conundrum!! Do we believe for a minute that what our WW II and Korea vets saw and experienced was any less horrible than what our Vietnam and Middle East vets are facing?? Yet, they were offered NOTHING in the way of emotional or mental health support…HAY-ell, no…they weren’t wussies suffering from battle fatigue like some *&*#$ goldbricking SOB! They were MEN! They were sent to do a job and by God they did it!! (…and often for YEARS at a time without relief…)
      The place of alcohol in the military, especially in the fifties and sixties, may very well have been an attempt at self-medicating what they couldn’t discuss….well, they COULD “discuss” but only with old war buddies and only when good and completely blue-blind drunk. And often wives and children took the brunt of the pain and anger these men were hiding deep, where not even they themselves could find it.
      I am a vet, the mother of a soldier, the wife of a vet, and the daugher and d-i-l of vets of this era. I think what you are seeing in rehab is a combo of this long ignored pain…..or, in some cases, a need to be “ORDERED” to do what is needed. In home care, I was always assigned to the grump old men, because I could speak their language…..

      • J.L. Creighton

        I just don’t like the insinuation that all vets are mentally ill. I don’t think it’s helpful, especially if there are no facts to back up such a smear.

        Some of the old and frail can legitimately have their own reasons for refusing medical care at the ends of their lives, that doesn’t mean they’re mad. Don’t dismiss otherwise-competent functioning adults as mentally ill just because they won’t follow your orders. If anyone’s won the right to refuse to end up spending the last decade of their life as a Medicare cash-cow in diapers at the mercy of the medical-industrial complex, it’s veterans.

        If they want to go, for God’s sake let them go.

        • NormRx

          My sentiments exactly.

        • SarahJ89

          M. Creighton,
          I totally agree it’s important to respect the decision of someone who’s decided to throw in the towel. But, with all due respect, PTSD is not a mental illness in the same sense as schizophrenia. It si far from madness. It’s a normal reaction to abnormal events in a person’s life. It can be managed, and managed well, over time. But make no mistake about it, if you send people to war a lot of them will come back traumatized. The human race actually would be a whole lot worse if this didn’t happen because we’d be a race of automatons. PTSD happens because we have empathy. And some people are more affected than others. There’s no shame in that. The shame lies in our inability to stop making war, actually.

    • SarahJ89

      You can be resilient and still have PTSD. It’s not an either-or thing. And there’s nothing quite like a major medical crisis to bring underlying PTSD to the fore.

  • buzzkillerjsmith

    People making choices that some others would not make is something we have seen before. Hence things such as gossip and a good chunk of world literature.

    You’ll be less frustrated if you don’t medicalize the life choices of others, doctor. We are(or we should be) the catchers here, not the pitchers.

    I give some advice but it’s their call if they don’t take it. Mostly I try to patch people up, help them a bit to manage the consequences of their own choices and of the ravages of indifferent nature.

  • buzzkillerjsmith

    Rehab is a subset of patching up.

    I agree that helping is good and giving autonomy as well, but it is a fine line between caring and controlling.

    Health care workers do get caught up in the details of what they do and forget about the big picture sometimes. Very common.

    • SarahJ89

      I found myself thinking the author sounded annoying and disrespectful of these patients. The medical machine has a standard protocol and I’m sure a lot of these patients never really decided to be there. Why on earth would they want to participate in goals they never set? And yes, I have worked with many post-stroke patients and understand depression is part of the picture. But I also understand people have the right to decide not to participate in reaching the goals other people, however well meaning, have set for them as part of a “protocol” no one really asked them if they wanted anything to do with. (Sorry for the tortured grammar.)

  • K.Anderson

    I am not a medical professional though I always hoped to be one; I also hoped to be a member of the military services, however I never got to do either and now find myself at the young age of 49 in constant pain and due to medical issues which seem to have no end in sight in a position of wondering how much more pain and suffering is life really worth and believe it or not I am not depressed, I am just being honest as I look at the quality of my life which worsens more and more each month.
    I believe that we patients who have a lot of pain and medical issues should be given the respect of an honest conversation between our caregivers, our families and ourselves where we are given the respect of being heard in regard to what our desires are for OUR lives. I believe the gentleman spoken about above is due that respect even more due to his role in the history of our country.
    I wqnt the right to die with dignity and when “I” think my life has lost the quality I have desired for it. I think he even more deserves that right.

  • dontdoitagain

    I had a submarine veteran friend who died a few years ago. I remember how frustrated he was with being unable to drive a car. His lovely wife drove him and she like being able to do that for him. HE didn’t like it at all. When he was confined to one of those motor driven cycles, instead of being happy that he was still mobile, he was devastated at his weakness. He didn’t want us treating him like a baby, it was humiliating. He was a submarine officer for heaven’s sake! I understand this.

    Even I have taken exception to (sorry nurses) NURSES treating me as if I was a mental midget because I had PHYSICAL injury. They were disrespectful of my wishes, argued with me, and in general treated me as if I were sub human. Meals were late, medications not properly given. Have you ever tried to argue with a nurse that your pain medication and nausea meds were to be given at the same time…and lost the argument?

    Many of us don’t want to be hounded by do-gooders “for our own good.” We want to be treated as adults and ASKED what we want. We want some control over what medical people do to us. A lot of it is NOT OK with us. Leave us a little peace. Let us decide what’s best for ourselves. I don’t want to live as a bed ridden invalid treated like an errant child by a staff concerned with protocol, and badgering me. (I didn’t even like it temporarily with a snapped femur)

  • T H

    If we are discussing veterans, sometimes a ‘Come to Jesus’ talk – just like the Gunnery Sergeant used to give them – is exactly what they need. Most civilians don’t get it: you all read the books, watch the movies, listen to the stories, but until you live through it, it is not the same. It’s like a man trying to understand what childbirth is like.

    And since we’re all painting with broad strokes and bright paint, here goes:

    Too often, doctors, nurses, and other professional staff treat the injured as if they need coddling. Yes, they need compassion – but not coddling. They also need to be treated as thinking, able adults. Don’t talk to me in baby talk or get angry if I decide not to do something. If I don’t see the need for my afternoon pain medicaiton, explain it once and then let me make my own G-D decision. If I am too worn out from morning PT, take me seriously when I tell you I don’t want to sit up in the chair.

    When I speak to ‘stubborn’ patients in the ED, whether they have a broken pelvis, broken neck, Pneumonia, or pulmonary embolism, I have sympathy AND empathy for them because I’ve been there. I say, “You’re an adult and you get to make your choice. My job is to diagnose and to give to you the best medical advice and options that I can. Here are your options…” Those who want to leave AMA get the same schtick.

    Yes, I realize that most rehab professionals are understanding, gentle, and pleasant. Those are fine. For most people.

    But old cranky veterans expect to be treated like men. Sometimes an old-fashioned, non-PC, verbal butt chewing IS what they need. And they CAN be delivered respectfully: just ask anyone over the age of 60.

  • SBornfeld

    What a wonderful story–and a testimonial to what your determination to see that your FIL got exactly the treatment he needed–terrific.
    Great when you’re actually able to get rehab and other medical staff on board. Ideally, social services in an acute care center should be able to point patients in the right direction, but how often does THAT happen?
    No substitute though for having someone there that cares.

    • Suzi Q 38

      Thank you Dr. Bornfeld.

      Social services informed me that he only qualified for a nursing facility with a small rehabilitation room.
      There was no PT person on staff every day, just a physical therapist that would come in to the nursing home by appointment.
      I knew that wasn’t good enough, as he required intensive intervention. He was completely paralyzed on one side aphasic, and could barely swallow to eat.
      I found a huge, sprawling, well known and state of the art rehabilitation hospital 20 minutes from our home.
      They took care of everything…even occupational therapy.

      It was just a matter of talking the HMO into paying for it.
      This was difficult. I told the social worker that he wasn’t leaving until he got into the neuro rehab facility.
      They told me based on his advanced age and physical disabilities, he only qualified for a nursing home.

      I had to plead that they were prejudiced because of his age. I told the insurance company that had he been in his 40′s or 50′s, they would have approved it. I got assertive and downright aggressive. I also had to tell them that he was coming home to live with us, so he had to be able to make transfers from the wheelchair to his bed, car, and to the bathroom. I did not know if he was going to live with us or not. I just wanted him to have a chance.

      The social services at the hospital thought that I would never get it approved, so I quit asking them for help.

      Yes, there is no substitute for someone that cares.

  • M.K.C.

    “It’s pretty infuriating to be treated like a toddler who just doesn’t
    know what’s good for him/her and needs the young ‘mommy/daddy’ to explain it. These men are probably either done with life or furious at having their dignity ripped away from them by life and by the medical establishment.”

    You have described my grandfather, and his feelings towards the medical system as he aged, to a “Tee”. Thank you.

  • M.K.C.

    If someone is actually mentally ill, to call them mentally ill is fine. But to tag them as “mentally ill” not because they actually are, but just to slap a negative label on them because they won’t play along with you, is a smear. It smacks of how Soviet Russia labeled her dissenters. We should be better than that.

    If you are not a psychopath, yet I label you as a psychopath in your permanent medical record solely because you disagreed with my course of treatment, that would be a smear.

  • M.K.C.

    You shouldn’t go around labeling people as mentally ill unless a real doctor has actually diagnosed them with a mental illness. I know some nursing home residents who would label most nursing home staffers as sociopaths. Should I go around spreading that as a “fact”, or would that be an unfair smear?

  • Suzi Q 38

    In these difficult situations, a physician can only do so much.

  • jpsoule@hotmail.com

    Agree with most of the above comments. A doctor or nurse’s job is to take care of the patient, not to be a nanny, nagger or minder. Once the patient and family know their best treatment options and the possible outcomes, it is the PATIENT’S decision, NOT yours. For example, I have many cancer and cardiac who choose to continue to smoke. They have been well informed of the consequences and advised every visit to stop. They would rather die months or years early but be ‘happier’ in their minds. It is their decision.
    Had the priviledge of treating a WWII vet in training in the 80s.
    We came to know each other well as he tried to drink himself to death and was a ‘frequent flyer’ at the local VA, as the family faithfully brought him in over and over again in DTs, when they cut him off or he stopped.
    Our medicine team, experts at DTs, ‘saved’ him many times.
    He wanted to die but his family kept watch on him in a trailer with no guns or knives and ‘rationed’ his alcohol, as the VA did inpatients those days. (Hard to believe now).
    One day he finally ‘beat’ the system… overdosed on aspirin, supplied by the VA itself for his heart. I failed to appreciate his anion-gap metabolic acidosis and pump his stomach in the ER. He coded a few hours after arriving on the floor.

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