Tuesday, September 27, 2011

The Dignity of Risk

I often write posts about an article in the morning newspaper or a just published medical journal.

This post is about an article written in 1972 - "The Dignity of Risk and the Mentally Retarded."

I have the privilege of serving on the ethics committee of the Commonwealth Care Alliance (CCA), a consumer governed, not for profit health system that cares for people with complex medical and psychological needs who are covered by Medicaid or "dually eligible" (for both Medicare and Medicaid). CCA tries to help its patients live in accord with their values, which often means helping people with significant impairments live in the community.

This can involve risk. A frail elder who lives alone may fall. A young adult with developmental disability and spasticity may aspirate and choke. If the elder loves her apartment, and the young adult takes great pleasure in his meals, clinicians and family members have to ask - how much risk is acceptable?

Bob Master, an internist who has been caring for vulnerable and neglected populations for decades and co-founder of CCA introduced me to the concept of "dignity of risk." Like all really good ideas, it seems obvious.

Robert Perske introduced the concept in his 1972 article. (The article is available on his website.) At the time he was Executive Director of the Greater Omaha Association for Retarded Children. After visiting programs in Denmark and Sweden, Perske wrote about the potentially negative impact of the natural wish to protect those with retardation:
...overprotection endangers the retarded person's human dignity and tends to keep him from experiencing the normal taking of risks in life which is necessary for normal human growth and development.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. Mentally retarded persons may, can, will, and should respond to risk with full human dignity and courage.

It is the author's firm belief that we now need to insure this dimension of human dignity for the mentally retarded and prepare them for facing real risk in a real world. Where many of us have worked overtime in past years to find clever ways of building the avoidance or risk into the lives of the mentally retarded, now we should work equally hard to help find the proper amount of normal risk for every retarded person. It is hoped that this paper has helped to illustrate that there can be such a thing as human dignity in risk, and there can be a dehumanizing indignity in safety!
In retrospect I realized that I'd applied the dignity of risk concept throughout my psychiatric career, though not by that name. As an example, meeting with a patient with schizophrenia and his family, if the patient had behaved in a rude or inconsiderate manner, I might say "Just because Joe has schizophrenia doesn't mean that he won't sometimes act like a complete jerk the way the rest of us do." The Joes of the world generally preferred being criticized for acting like a jerk rather than being indulged as an impaired person who couldn't be expected to do better.

Suicidality posed a tougher challenge. A patient with acute suicidal intent accompanied by a plan, available means, clinical depression, and a history of suicidal acts obviously requires hospitalization. But some people with chronic depression are chronically suicidal. The goal - curing the depression - can't always be achieved. What then? The situation required assessing with the patients and their families what their goals for life were and how much risk they were prepared to tolerate. Sometimes living with a recognized risk seemed better than making elimintion of risk the primary goal.

Doctors and nurses in the CCA program deal with trade offs between risk and quality of life on a daily basis. The Hippocratic precept - first, do no harm would seem to imply a very cautious approach, but only until we consider Perske's comments about the potential for human dignity in risk and the risk of dehumanizing indignity in safety!


Carol L. Powers said...

Absolutely true about recognizing a primary part of being "human" means participating in some risky behaviors - from the three-year old who toddles over to explore a dog's tail, to a teenager letting go of a rope swing dangling over a pond, to women getting pregnant, and men driving too fast . . . As long as those choices do not directly adversely affect others (which may be a concern in the child-bearing and fast driving categories of behaviors), then the benefit of preserving dignity/burden of risk ratio works.

As Chairperson of Ethics Committees for both a Regional Ethics Committee for the Department of Developmental Services and CCA, I am heartily "in your camp" in working hard to preserve and protect individuals' right to choose, acknowledging that at times certain choices will be inherently risky.

I struggle all the time with the thought that if an individual were not "in the system" - whether that be with DDS supports or in a psychiatric unit or in a nursing home or in any other closely supervised setting - no one would be asking the question - "Should they be allowed to do xyz?" I understand the system is exposed to the not insignificant risks of caring for such individuals and there is liability attendant to that responsibility, but I also balk at requiring individuals to give up an essential element of autonomy as a quid pro quo for obtaining supports. (This discussion is illustrative of why "Risk Committees" and "Ethics Committees" have very different agendas!)

Preserving an individual's "dignity of risk" is part of what gives each and every one of us the dignity of personhood!

Thank you for sharing, Jim!

Jim Sabin said...

Hi Carol -

I know from our previous conversations that we agree about the dignity of risk. Your comments about children point to the fact that parents have to struggle with the question of how much risk is the right amount from the toddler phase on. Giving too little opportunity for risk can produce an overly timid child. Too much risk can lead to all sorts of trouble.

Clinicians have to deal with the question cognitively and emotionally. We shouldn't just follow our gut responses - these often track with our own values, not necessarily those of our patients/clients.

And, with regard to adversely affecting others, it's clear that serious risk of physical harm to others should trump the opportunity for the individual to take the risk. But what about causing anxiety to others? That gets into the realm of legitimate ethical debate.

Thank you for your comments. I look forward to discussing the topic(s) further with you!



eric said...

1. Some risky behavior is the right behavior. A toddler must have the freedom to fall if he/she is to learn how to walk. Our elders must have the freedom to pull out their IVs and refuse treatment in order to pass in the way most comfortable for them.
2. We agonize over choices of autonomy vs risk in the care of our patients. We are reminded that our patients are free to make poor choices. But must society pay for the consequences? What about when political leaders, and whole countries, make poor choices? Who pays for the consequences of those risks? Who paid when an entire world ignored a Nazi Germany or an Al Queda? Who pays when political leaders deny the reality of global climate change?

Jim Sabin said...

Hi Eric -

As always, it's good to hear from you! Thank you for the comments.

With regard to the first - elders (presuming decisional competence) have a right to pull out their IVs, but if the pulling represents a true decision and not simply agitation in a reversible state of delerium, it's sad that the IV was put in in the first place, or that the nurse isn't removing it now!

Your question about who should pay for bad decisions is a tough one. I don't see a single answer. For bad decisions about our diet, as with sugar containing soft drinks, I favor levying a tax, as we do with cigarettes. I don't think of it as a "sin tax" - cigarettes and Coca Cola aren't "sins," but they do, over time, impose costs on our fellow citizens, through our own increased need for health care. As a psychiatrist, it wasn't uncommon for me to see someone with schizophrenia or bipolar illness who (a) I believed was at high risk for recurrent episodes but who (b) did not want to use medication as part of the treatment. If they persisted in that decision after we'd discussed the risks I felt that they were "entitled" to try it, and that it was fair to tap into the insurance to pay for hospitalization if they experienced a severe relapse. After all, they could have been right in their belief/hope that medication wasn't needed. And, ideally, if they were wrong, they learned from the experience.

But when medication refusal led to 5 or 10 potentially preventable hospitalizations, in addition to my distress about the patient, I shared your concern that the bad decision was being paid for by others as well as by the patient.

As a society, we're rather backwards in the degree to which we think of health and health care only in individual terms. That's led us to allow 50 million to go without insurance, and also not to notice that our own choices affect our fellow citizens, not just ourselves.



eric said...

Jim--re #1. True. As physicians we want to figure out if our patient near the end of life suffers toxic-metabolic delirium or pre-terminal delirium or depression or misunderstanding, or etc., that leads to their pulling out their IV. On the other hand, as we study normal growth and development, aging and senescence, we observe that the opportunities for self-actualization expand and then contract. By the time our patient near the end of life has ended up in the hospital bed with an IV, their options for self-actualization are quite limited. Their body and mind don't work the way they used to, and they never again will. As your blog post exhorts us to honor the dignity of risk in young people with developmental delay, may we also request the same honor for elderly who are near the end of life's development? Even a person with advanced dementia still has some basic humanity. There comes a time when it may be that the only way that a person may express themselves, may make a choice, may take a risk, is to pull out the IV.--Eric

Jim Sabin said...

Hi Eric -

Thank you for the further comment!

I agree 100% that the dignity of risk concept applies to us at all ages, and is relevant for people with dementia as well. It's been a long time since I cared for patients in a general hospital, but my memory is that sometime pulling out an IV represents a reflexive response to an irritating stimulus and not (necessarily) a judgment expressing self-determination. Distinguishing between those two situations could obviously be difficult. But I agree that if it appears that pulling out an IV is the patient's way of saying "I do not want this intervention to continue," we should respect the person's decision.



Michelle Papazian said...

As the program manager and palliative care consultant for Life Choices at CCA I was reading this thread with interest. I also sent it to my brother, a clinical social worker in the Bay area who does psychiatric crisis work. I thought I would post his response as he raises some good points...

... Interesting position. In general I like what Dr Sabin is saying ( since i tend to be a risk-taker in my personal life ); it makes a lot of sense. Playing Devil's advocate however, it's
real easy to find oneself on the slippery slope as a clinician.

I was slammed in the ER last Sunday night working from midnight to 3:30 AM on three psychiatric consult requests. One of these was for a three hundred pound African American, mildly retarded girl with a comorbid diagnosis of psychosis, brought in by police on a hold for danger to others. They had recently changed her meds from a long-acting injectible to another antipsychotic that did not have the unfortunae weight gain side effect. Sadly the new medication was not as effective in managing her agitation and impulsivity and in spite of having 24 hour, in-home care, she was becoming combative, menacing and violent with her supports and neighbors, threatening to kill them, chasing them and brandishing knives. She was also a cutter with a network of transverse lateral scars on her forearms from a long history of superficial palliative cutting... At interview she was oriented, calm, cooperative and denied active intention or plans to harm herself or anyone else.

Predictibly she had very poor insight into the drivers of her alleged violent behavior. She was lying in her bed, calmly resting and presented with a resigned and somewhat sad affect.

The question before me was to admit to a locked hospital or return to her caregivers? Since she had 24 hour supervision and a developmental disability it was unclear what benefit a locked psychiatric hospital might provide for her other than to give those responsible for her care some respite and time to put together a more robust supervison arrangement. The temptation would be to assume some risk since she was monitored 24/7 and perhaps have her meds adjuted in the out-patient setting... In the end, I admitted her ( which is never inexpensive ) because her agency supports felt like they could not manage her and perhaps she could get her meds stabilized in the safer, more contained psychiatric in-patient setting...

My bet is that your agency is faced with these kinds of cases every day in one way or another and i think sometimes when one is playing at the edge of risk scenarios, you sometimes get it right and you sometimes get it wrong. The question in my mind is, does the principle of allowing more risk actually save resources in the long run, or do the costs ( direct and indirect ) of those rare instances when things go terribly off the rails, really save much when one does cost averaging?

In truth, "assuming risk" is what I get paid to do every day in psychiatric crisis work. I've come to believe that half of it is legal and circumstantial, and the other half is just good clinical intuition. Seemingly for every guideline or rule ( both legal and anecdotal ) the clinician is always faced with some situation that argues for an exception --and this is where assuming risk becomes an art...

I suppose this is the caveat I would add to Dr Sabin's observation is that only solid, seasoned clinicians ought to be the ones in the position of making these tough clinical choices. Otherwise it seems that the narrow margin of benefit from allowing more risk tips unavoidably in the other direction, opening the door for criticism and ever more stringent controls, regulation and of course, increasing costs.

Jim Sabin said...

Hi Michelle -

Thank you for your thoughtful and clinically rich comment.

From my own clinical experience, for two main reaons I would have responded as you did to the emergency situation you describe.

First, the situation involved risk to others as well as risk to self. I have often relt relatively comfortable with plans that posed some risk to the individual when the person's values pointed clearly in the direction of the choice. But I am much more cautious, as you were, when a choice poses significant risks to others that the others have not consented to.

Second, your patient's "decisions" don't sound like competent, value-based choices. This can be hard to judge, but as you say, it's the kind of assessment clinicians in settings like an emergency room have to make every day.

I think of the dignity of risk concept as driven by respectful patient care, not by a primary concern with cost. I often had patients who believed that their stability and well-being did not require medication. If their belief hadn't been contradicted by previous efforts to stop the medication, if they fully understood the risks to themselves created by potential relapse, and if the risk of relapse didn't pose danger for others, I often worked with them to conduct a prudent trial. In these situations I sometimes said - "I'm not a worrier, but I'm concerned about whether this will work for you. Let's hope that you're right and I'm wrong..."

The situation you describe is the most difficult to deal with - it involves major concerns about decisional competence on the part of the patient and legitimate concerns about risks to others as well as the patient.