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What Matters to You? A Letter to IHI

By John Gauthier | Monday, July 7, 2014
Peter Libby is a registered nurse with more than 25 years of nursing experience. The following post is from a letter he wrote to IHI Director Kelly McCutcheon Adams about his experience in the health care system as a patient diagnosed with Crohn's disease. Libby, 51, shares his story of deciding what his end-of-life care wishes are after a series of debilitating hospitalizations for septic shock.

I am a Registered Nurse (RN) with over 25 years of nursing experience. I have had the good fortune to work clinically, managerially, and administratively in acute care (Medical-Surgical; Orthopedics; Inpatient Detoxification; and Critical Care). I have also held positions in a SNF, sub-acute rehab, and traditional long-term care.

I have been diagnosed with Crohn’s disease. Crohn’s is primarily a disease of the small intestine, but can affect the entire gastrointestinal tract. For me, that means everything from mouth ulcers and a spastic esophagus to needing to know the exact location of facilities if dining out or the distance home prior to ordering.

As Crohn’s is an autoimmune disorder, the primary medical management is suppression of the immune system. I have been treated with gastrointestinal anti-inflammatories, steroids, and azathioprine (anti-rejection agent) since 1992 – for 20 years. As these agents suppress the immune system, individuals become “hosts” to any organism they come in contact with, eventually reaching a toxic point at which sepsis or septic shock quickly develops.

I was hospitalized for septic shock in November-December 2012 and again in October-December 2013. In 2013 I was so critical I was flown to a tertiary medical center 63 miles from home. Each episode has been progressively worse. In 2013 I required 7 liters of intravenous fluid to raise my blood pressure from a reading of 40 mmHg to 70 mmHg. It was a scary time. So was the post-acute phase. Acute rehab took 3-4 weeks in 2012 to return to my baseline. In 2013 it took six weeks of sub-acute rehab to return me to a level where I could safely be at home the two days a week my spouse works – NOT at my functional baseline.

Each time I have one of these episodes, more and more of me is taken and less returns. So my wife and I have recently had to make the very difficult decision that I no longer wish to be resuscitated should my medical condition require it (I am 51 years old). Not an easy decision, but through much prayer, counseling, and tears, we have made the right decision. We have spoken with our primary care provider (PCP) and the Board-Certified Palliative Care Specialist at the local hospital about my expectations of care. We have also, together, completed a MOLST form. I am now a MOLST B [do nothing and let nature take its course]. I am comfortable that my expectations will be honored without doubt. The CRNP that manages the Palliative Care program is also a close friend and we have been over, in detail, the expectations and made sure she is totally comfortable with what must be ordered at the time of my admission for end-of-life care.

I write this not for myself but for the many individuals who have not been able to benefit from their advance care planning. I have witnessed and continue to hear about episodes in which individuals have a completed MOLST and have had conversations at length with family members prior to the time of admission for end-of-life care, yet their wishes are not adhered to. The patient who is admitted to a hospitalist (no PCPs admit to many local institutions), and the family steps up and wants everything done for the patient (the same patient with the completed MOLST mentioned a moment ago). Or the patient who is admitted to palliative care from the emergency department but whose daughter, after 24 hours, states, “She [mother] isn’t dying fast enough; let’s move her to a regular room and treat her.” (Direct quote, I am not kidding. What is worse, it was honored: the patient was moved to the ICU and treated vigorously. Eventually, the poor lady died a miserable death.)

Cases such as these, despite interventions of facilities’ ethics committees, still result in patient wishes that are not respected. There will never be a 100% effective solution – I have learned that in many years of nursing – but patients are entitled to better. How do we, as advocates, get families AND hospitalists to accept the terms of the MOLST document that the patient, in good faith and sound mind, voiced and anticipated receiving but doesn’t? I have provided two small examples of what is happening on an almost continuous basis in many hospitals. Family members arrive, despite sitting down and talking about the plans, and want “one more try”; or “another round of chemotherapy won’t really hurt anything” or “you were not the doctor that completed this form with him/her, how do know what they REALLY wanted?” These statements are made daily throughout health care as the voice of the patient, not to mention their expectations, is overlooked and ignored.

Health care providers need to remember, particularly those not immediately aware of the individual (hospitalists; case managers; social workers; chaplains; etc.), that these forms were completed when individuals were lucid, aware, and understanding the implications of what their “yes” and “no” responses meant. Invariably there are family members who “don’t feel comfortable discussing these forms; after all, look how good mom/dad/grandma/grandpa/etc. looks.” Yes, at the time they might look healthy – but they made these decisions in advance of when the ultimate decision will be implemented, in order to make this process easier on everyone. Respect and honor their wishes. Require everyone to talk about the individual’s wishes and voice how they feel, but they must answer honestly. Are they wishing quality for the individual or quantity for themselves?

Sadly, too often in health care we can provide quantity when all the dying want is quality.

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