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University of Pittsburgh

Quality of Life Issues/Living Will

The issues of life support, nutritional and hydration devices as well as respiratory assistance are difficult yet important topics for people with ALS to discuss with their families and physicians. Physicians and nurses are available to discuss the options for people with ALS. It is important for patients to learn about all options available and learning what treatments are life extending versus comfort measures, prior to making any decisions.

Information about “Advanced Directives,” such as living wills and durable power of attorney for health care, can also be provided. The “living will” exercises a patient’s right to refuse or accept medical treatment that artificially prolongs his/her life. This document is prepared while the patient is fully competent, in case he/she becomes incompetent of making this decision at a later time. This document provides clear instructions regarding the patient’s choice of extended medical care.

See http://www.upmc.com/HealthAtoZ/patienteducation/Documents
/MedicalDecisionMaking.pdf
for more information and forms for living will and power of attorney.

The “durable power of attorney for health care” is the right of patients to appoint another person to speak for them if they are incapable of expressing their medical treatment preference.

Recognizing that respiratory failure and/or inability to take in adequate nutrition is frequently the cause of death in cases of ALS, I hereby wish to state in advance my preference regarding invasive mechanical ventilation and feeding gastrostomy tube placement. It is my desire that these preferences guide the decision making of my family and my physician(s) in the event that I am unable to participate in a meaningful way in discussions regarding my health care. I understand that none of the choices made here will be put into effect without my agreement as long as I retain the capacity for decision making and the ability to communicate, in some form, those decisions.

I. With regard to invasive mechanical ventilation requiring endotracheal intubation, it is my preference that:

(Choose one of the following three main options):

A. __ Invasive mechanical ventilation not be instituted under any circumstances. I understand that such a choice will almost certainly mean that my death will occur earlier than if such support is instituted. I also understand that some processes that might precipitate respiratory failure may be readily reversible and that, therefore, mechaniĀ­cal ventilation may not necessarily be long-term, yet I still do not wish to undergo mechanical ventilation even in such circumstances.

B. __ Invasive mechanical ventilation be used only when, in the judgment of appropriate medical personnel, the acute cause of respiratory failure is believed to be likely reversible, for example, in the case of choking. If, on the other hand, respiratory failure is a result or the irreversible deterioration from ALS. I do not wish to undergo mechanical ventilation, knowing that such a choice will almost certainly mean that my death will occur earlier than if such support is instituted.

If invasive mechanical ventilation is used and it becomes evident that long-term mechanical ventilation is required, then (choose none. one. or more of the following):

1. __ I wish for mechanical ventilation to be discontinued regardless of the circumstances, knowing that this will result in my death.

2. __ I wish for mechanical ventilation to be discontinued if I should be diagnosed in writing by two physicians to be in a permanent unconscious condition.

3. __ I wish for mechanical ventilation to be discontinued it I become permanently unable to effectively communicate ("locked-in").

4. __ I wish for mechanical ventilation to be discontinued if I am unable to return to living at home.

5. __ I wish for mechanical ventilation to be discontinued if my care results in major financial hardship or other burden on my family.

C. __ Invasive mechanical ventilation should be instituted in all circumstances for respiratory failure not treatable by other measures, and long-term mechanical ventilation with tracheostomy should be continued with the following exceptions (choose none. one. or more of the following):

1. __ I wish for mechanical ventilation to be discontinued if I should be diagnosed in writing by two physicians to be in a permanent unconscious condition.

2. __ I wish for mechanical ventilation to be discontinued if I become permanently unable to effectively communicate ("locked-in").

3. __ I wish for mechanical ventilation to be discontinued if I am unable to return to living at home.

4. __ I wish for mechanical ventilation to be discontinued if my care results in major financial hardship or other burden on my family.

II. With regard to nutrition provided by feeding percutaneous gastrostomy tube (PEG), it is my preference that (Choose one of the following two main options):

A. __ I do not wish placement of a feeding gastrostomy tube at any time during the course of my illness.

B. __ I wish for placement of a feeding gastrostomy tube at a time when it is necessary to provide me with nutrition and medications, as determined by my physician, regardless of my choice concerning invasive ventilation. It should be continued with the following exceptions (choose none. one, or more of the following):

1. __ I wish for gastrostomy tube feeding to be discontinued regardless of the circumstances, knowing that this will result in my death.

2. __ I wish for gastrostomy tube feeding to be discontinued if I should be diagnosed in writing by two physicians to be in a permanent unconscious condition.

3. __ I wish for gastrostomy tube feeding to be discontinued if I become permanently unable to effectively communicate ("locked-in").

4. __ I wish for gastrostomy tube feeding to be discontinued if I am unable to return to living at home.

5. __ I wish for gastrostomy tube feeding to be discontinued if my care results in major financial hardship or other burden on my family.

In all cases where I choose not to start or to discontinue mechanical ventilation or nutrition via gastrostomy tube. I instruct my physician to provide me with adequate medication to relieve anxiety and discomfort that may occur during the final course of my disease.

708 Issues & Opinions; Advance Care Planning in ALS

MUSCLE & NERVE December 2001