4. State acceptable treatment outcome considerations with respect to cognitive and/or physical dysfunction
Many people are less willing to tolerate future cognitive, as compared to physical, disabilities, yet once again current power of attorney documents often fail to appropriately address these concerns. Many only speak to some of the most severe states of cognitive dysfunction, such as persistent vegetative states (PVS). Such omissions may, for a particular patient, fail to consider less severe states of compromise, which are much more common in clinical practice and which he or she may also find unacceptable. Further, patients suffering from less severe states of cognitive impairment may have to cope with the symptoms longer than someone in a PVS whose condition meets the threshold set out in their power of attorney directives.
Patients may develop any of a broad spectrum of cognitive and physical impairments which, while not as severe as persistent vegetative and minimally conscious states, nonetheless require that decisions be made with strong implications for quality of life. Advance directives often remainsilent at times when the guidance they could have provided is most needed. Furthermore, in the case of an anticipated diagnosis of PVS, if the advance directive boilerplate text includes a clause that says the person does not wish to live in a persistent vegetative state, as they often do, does this mean that life-sustaining treatments should continue until that diagnosis is made with certainty?
The diagnosis of persistent vegetative state has a time component built into its definition. This means waiting months; months spent on life support, usually with a tracheostomy and a percutaneous feeding tube for artificial nutrition until the period of delay has elapsed. Does the client understand this, and is she or he willing to wait for the diagnosis to be conclusively made? If the diagnosis is confirmed, does it mean that artificial nutrition and the tracheostomy should be withdrawn, or does it mean that future treatments not be initiated e.g. antibiotics for infections? What if the diagnosis is a minimally conscious state? Would such a relatively subtle difference in level of consciousness be acceptable?
The current texts of power of attorney documents are too often completely silent on such issues, ones that are common in clinical practice if such diagnoses are being considered. To provide assistance where it is needed when engaged in estate planning, any advance directives should speak directly to these issues as follows:
“In the event that my prognosis for any illness is evaluated to result in a persistent vegetative and/or minimally conscious state, I direct that my physicians discontinue any treatments not aimed at palliating any pain and distress I may be experiencing immediately without waiting for the time to elapse to make such a diagnosis with medical certainty. Should I already have undergone a tracheostomy and/or percutaneous feeding tube insertion, I direct that these be removed and that I be palliated.”
The author wishes to encourage and engage in discussion regarding the directives she proposes here. Please take a moment to express your thoughts and critical commentary in the comments section below.
About the Author
LAURA HAWRYLUCK received her MD in 1992 from the University of Western Ontario where she also served her Internal Medicine residency. She completed a Fellowship in Critical Care at the University of Manitoba in 1997 and received her MSc in Bioethics in 1999 from the Joint Centre for Bioethics and the Institute of Medical Science at the University of Toronto. From 1999-2001 she was Assistant Professor of Critical Care/Internal Medicine, Queen’s University, Kingston, Ontario. In March 2000 she was appointed Physician Leader of the national Ian Anderson Continuing Education Program in End-of-Life Care at the University of Toronto and is currently Associate Professor of Critical Care Medicine at the University of Toronto. In 2002, she was awarded the Queen’s Golden Jubilee Medal for contributions to Canada in recognition of her work in creating the Anderson Program and improving end of life care for Canadians. Dr. Hawryluck is co-author and editor of “Law of Acute Care in Canada” to be published shortly by Carswell, a division of Thomson Reuters.
Dr. Hawryluck is deeply involved in international humanitarian projects. She has worked with critical care and burn units in Indore India and Cote d’Ivoire on a variety of quality improvement and educational initiatives. She was co-creator and co-Director for RCCI of the first Doctorate in Medicine Program in Critical Care in the entire country of Nepal. She worked with the Nepal Medical Council as an international consultant to enact a Code of Ethics and Professionalism for all physicians in Nepal.