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Why Patient Autonomy Is Critical To Good Health Care

Many of the patients that I treat have brain injuries. Whether caused by a stroke, car accident, fall, or drug overdose, their rehab course has taught me one thing: nobody likes to be forced to do things against their will. Even the most devastated brains seem to remain dimly aware of their loss of independence and buck against it. Sadly, the hospital environment is designed for staff convenience, not patient autonomy.

In the course of one of my recent days, I witnessed a few patient-staff exchanges that sent me a clear message. First was a young man with a severe brain injury who was admitted from an outside hospital. EMS had placed him in a straight jacket to control his behavior on his trip and by the time I met him, he was in a total panic. Sweating, thrashing, at risk for self harm. He didn’t have the ability to understand fully what was happening but one thing he knew – he was being restrained against his will. The staff rushed to give him a large dose of intramuscular Ativan, but I had a feeling that he would calm down naturally if we got him into a quiet room with dim lights and a mattress with wall padding set up on the floor. As it turned out, the environmental intervention was much more successful than the medicine. Within minutes of being freed to move as he liked, he stopped moving much at all.

Later I was speaking with one of my patients in the shared dining room. An aide arrived with a terry cloth bib to tie around his neck so that he didn’t spill anything during lunch. I saw a flash of anger in my patient’s eyes as he pulled the bib away from his neck with his good arm and placed the towel on his lap instead. I could tell that he found the bib infantalizing, though none of us had thought twice about it before. Here again, a patient did not appreciate having everything determined for him, right down to napkin placement.

Towards the end of the day, I was bidding farewell to a patient whose care would be provided by another attending physician going forward. I was summarizing my view of his progress and expectations for the future, and stopped to ask if he had any questions. What he asked completely flummoxed me. Instead of probing for details about his medical condition and treatment options, he asked, “Will the new doctor be a good listener? Will she pay attention to what I’m saying and be easy to talk to?”

It is unfortunate that healthcare providers and patients are often on very different wavelengths. In Atul Gawande’s recent book, Being Mortal, he argues that nursing homes have often failed to provide healthy environments for patients because they have focused exclusively on safety and meeting basic needs (eating, dressing, bathing, etc.) on their terms. The removal of patient independence unwittingly results in devastating loneliness, helplessness, and depression. It seems to me that hospitals end up doing the same thing to patients – if only for a shorter period of time.

I was moved by Gawande’s book (and I consider it required reading for anyone facing a life-limiting illness or caring for someone who is). It renewed my conviction about the importance of rehabilitation – helping people to become as functionally independent as possible after a devastating injury or disease. Even as we age, we all become less able to do the things we hold dear. Preserving dignity by prolonging independence, and respecting patient autonomy, are often overlooked goals of good health care. It’s time to think about what our actions – even as small as placing a bib around someone’s neck – are doing to our patients’ morale. Maybe it starts with asking the right questions… Or better yet, just watching and listening.

Death By Stubbornness: What’s A Doctor To Do?

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.

When Is The Right Time To Tell Patients The Truth?

Although most doctors say they believe in the immediate free flow of information from physician to patient, the reality is that many hospitalized patients don’t receive a full explanation of their condition(s) in a timely manner. I’ve seen patients go for days (and sometimes weeks) without knowing, for example, that their biopsy was positive for cancer when the entire medical staff was clear on the diagnosis and prognosis. So why are patients being kept in the dark about their medical conditions? I think there are several contributing factors:

1. Too many cooks in the kitchen. During the course of a hospital stay, patients are often cared for by multiple physicians. Sometimes it’s unclear who should be the first to give a patient bad news. Should the news come from their primary care physician (who presumably has a long standing, trusting relationship with the patient) or the surgeon who removed the mass but doesn’t know the patient well? In many cases each assumes/hopes the other will give the patient the unpleasant news, and so the patient remains in the dark.

2. Family blockades. It often happens that a patient’s spouse or family member will request that news of an unpleasant diagnosis be delayed. They argue that it would be best for the patient to feel better/get stronger before being emotionally devastated by a test result. In some cases the family may be right – grief and shock could impair their participation in recovery efforts, resulting in worse outcomes. Cultural differences remain regarding how patients like to receive information and how families expect to be involved in care. American-style, full, immediate disclosure directly to the patient may be considered rude and inappropriate.

3. Uncertainty of diagnosis. Sometimes a clear diagnosis only develops with time. Biopsy results can be equivocal, the exact type of tumor may be unclear, and radiology reports may be suggestive but not diagnostic. Some physicians decide not to say anything until all the results are in. They cringe at the prospect of explaining uncertainty to patients, and without all the answers they’d rather avoid the questions. What if it looks as if a patient has a certain disease but further inquiry proves that she has something else entirely? Is it right to frighten the patient with possibilities before probabilities have been established?

Although sensitivity must be applied to the nuances of individual care scenarios, my opinion is that patients should be immediately informed of their test results and their physician’s thought processes at every step along the diagnostic pathway. Family member preferences, however well-meaning they are, cannot trump the individual’s right to information about their health. If physicians are unclear regarding which of them should break the news to a patient then they should confer with one another and come up with a plan ASAP.

The right time to tell the patient the truth is: now. To my colleagues who avoid giving patients information because it is personally uncomfortable (often leaving me or other third party to be the messenger), I have two words: “man up.”

Bend The Cost Curve In Cancer Care: Reduce Excessive Surveillance Testing

This is the second in a series of posts on Bending the Cost Curve in Cancer Care. We should consider the proposal, published in the NEJM, gradually over the course of this summer, starting with “suggested changes in oncologists’ behavior,” #1:

1. Target surveillance testing or imaging to situations in which a benefit has been shown. This point concerns the costs of doctors routinely ordering CTs, MRIs and other imaging exams, besides blood tests, for patients who’ve completed a course of cancer treatment and are thought to be in remission.

The NEJM authors consider that after a cancer diagnosis many patients, understandably, seek reassurance that any recurrence will be detected early, if it happens. Doctors, for their part, may not fully appreciate the lack of benefit of detecting a liver met when it’s 2 cm rather than, say, just 1 cm in size. What’s more, physicians may have a conflict of interest, if they earn ancillary income by ordering lab and imaging tests.

My take:

It’s clear that some and possibly most cancer patients get too many and too frequent post-treatment surveillance tests. Read more »

*This blog post was originally published at Medical Lessons*

A Young Person Refuses Life-Saving Treatment: Is That Ok?

In my Monday post, I posed a challenging real-life dilemma we recently faced in the ER. As always, I modified the posited case from the actual facts but the broad outlines were true to life: A young person of questionable capacity wants to refuse lifesaving treatment.

Short answer, for those not interested in the discussion: This case is a no-brainer. You intubate. In this case, sadly, the outcome was not good. As I hinted, early hypoxia in the setting of blunt chest trauma is a bad sign. The patient was intubated, but became progressively more difficult to ventilate over the next couple of days and subsequently died. The family was at the bedside and, from what I understand, they were very happy to be able to be with him in his final hours. On the other hand, due to his drug abuse, he proved extremely difficult to sedate (even on max propofol!) and was agitated and combative, in restraints, until hypoxia began to take its toll. While I am confident I did the “right” thing, the tally sheet is decidedly mixed as to whether was beneficent in its effect.

Discussion: Read more »

*This blog post was originally published at Movin' Meat*

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