Friday, April 25, 2014

A Moral Community in the ICU

When I entered the room, my patient was surrounded by worried family.  They had lots of questions.  My concern was that I didn't know either the patient or family.  Dan had been brought to the ICU after a cardiac arrest outside the hospital.  The medics had gotten the heart restarted with CPR and shocks, but Dan was unconscious and on a ventilator.  So how to begin?

I introduced myself and explained that I needed to examine Dan and get more information from the family, then we would see what else we needed to do.  The anxiety was palpable.  He was soon to also be seen by the neurologist.  The cardiologist felt that his heart was "stable" and that he had had an arrhythmia, not a heart attack.

A son from Minneapolis was calling in.  The two other children at the bedside and Sam's wife, Marilynne, were in tears.

So how do I proceed from here?  The medical evaluations were pretty straight forward.  But communicating with the family is something I only learned over time.

Family conferences and  decision making with the medical providers occurs daily in the ICU, but the effectiveness varies widely.  A medical social worker and I developed a shared decision making pathway for medical providers to use.  One of the steps in the process is the concept of forming a moral community.

We would invite the family to meet in a quiet place, have a telephone/speaker for those unable to be there, and go around the room introducing ourselves.  The moral community concept is much like what goes on in an ethics committee discussion. The discussion centers around the patient's wishes and values respecting the patient's autonomy.  The community of caregivers (medical and family) begins to form around those values and wishes.  Caring, empathy and sharing are all key to begin to have the group act functionally as a moral community.  Modeling of these behaviors at times helps deal with the anger and frustration often present.

For more information please see our publication about a guide to shared decision making in serious illness.

Dan's family was devastated that he suffered irreversible brain death following his cardiac arrest.  Using shared decision making they agreed with removal of life support.  Allowing transparency, showing caring, focusing on Dan's wishes and values - all of these gave the family a sense that they were doing the right thing.

Tuesday, April 8, 2014

Is the Use of the POLST Form Controversial?

Susan was 76 and dying at home in the days before Hospice and before the use of the POLST form.  A neighbor came in the relieve Susan's daughter who went to the store.  Suddenly Susan stopped breathing and the neighbor called 911.  The medics came and, not having instructions to the contrary, did CPR and brought her to our ER unconscious and intubated.  The ER physician called me in the ICU saying, "We got a sad situation here.  He explained what happened and that the daughter, who finally found Mom in the ER, was distraught saying, "None of this should have happened."

We let the patient die in the ER, had social service work with the family.  The medics were upset that they'd performed CPR ("medical last rites") in such a patient.  The ER wasn't pleased to have a patient die there but a hospital admission seemed pointless.

The POLST (Physician's Orders for Life Sustaining Treatment) was pioneered in Oregon in 1991 and has gradually worked its way state by state so that about 26 states now have a POLST statute.  It has been validated in Oregon to be effective in honoring a patient's wishes.  The medics I have worked with have praised the POLST form because it tells them exactly what to do, or not do, if they are called and the form is available.

The POLST is most commonly advocated for those expected to die within a year or the very frail elderly.  The form translates the patient's values and wishes into actual medical orders which will be honored by 911 responders.  In Washington the form must be signed by the patient (or surrogate) and the medical provider.

But it's not without controversy and the criticism sounds much like the fear over Death Panels which has, gratefully, died away.  Conservative Catholic bishops in Wisconsin and a few media sites have warned of the dire consequences of POLST forms.  Their criticism implies that they are Do Not Resuscitate forms that also withhold antibiotics, fluids and nutrition.  Actually the forms do allow for a wide range of choices from full care, limited care, or comfort care.  They are intended to put the patient's wishes into real time medical orders.  They can be revoked by the patient or surrogate if circumstances change.

Probably the most common site for the use of the POLST is with Hospice patients, who are expected to die within six months.  But there is a tendency now to use (or even try to require) the use of the POLST form in retirement community facilities and nursing homes.  Recently I gave a talk about advance care planning to a well known retirement community in Seattle.  "How many of you have completed your Living Will and Power of Attorney for Health Care?", I asked.  80 or 80 responded positively.  But the surprise was that 70 of 80 had completed POLST forms.  These were folks probably from their mid seventies up into the 90's but all were in independent living (no assisted living, etc.).  To me this is a surprising use of the POLST form and goes beyond its initial intention.  Do all of the 75 year olds really know their wishes about a ventilator for pneumonia, or CPR, etc?  Of course the POLST form can say, "Do Everything" but then it becomes redundant.  Also, in a practical sense how is the POLST form going to be reviewed or retrieved if the patient is in the dining room or gym or out shopping?  Registries can be tried but real-time access is needed in the acute situation for the POLST to prevent unwanted CPR (hence bright color is used so the medics can spot it).  However, some aging rather healthy folks seem sure that they do not want CPR in any circumstances.

At a talk I gave yesterday in California, a couple showed me the bracelets they were wearing that referred to their completed POLST form.  He was in his 80's and she was a hospice chaplain in her early 70's.  I asked her, "How can you really be sure that you'd not ever want CPR?"  She responded, "I just don't like the odds.  I'd rather pass on tha than risk severe brain damage.  I've had a pleasant life, and a cardiac arrest wouldn't be a bad way to die, ever though their might be a 25% chance of getting me back to my normal self with CPR."  So this use of POLST may have this practical use in certain well informed folks who are sure of their choices, but it seems ill adapted for this.  Will the 911 responders really see their medic alert bracelets and will they really have time to find, thus honor, the POLST?

Even with this latter concern of mine, the benefit of the POLST is huge. Recently, the American Medical Directors Association indorsed the POLST,  But becoming mainstream in our rather broken heath care "system" in the USA will require more time for the POLST.  We can only hope that the remaining states can learn from the pioneering efforts in Oregon.  It indeed honors patient autonomy and choice.  And the states where the POLST is currently used, should have oversight and guidelines for appropriate use.


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