Dying and Donating Your Organs but by Whose Criteria? Yours?:An Ethical and Legal Challenge All Should Consider

Stanley Terman,  M.D., PhD. who is Medical Director and CEO of Caring Advocates has written to this blog in January 2008  a commentary on the issue "Should Physicians Provide Information  so Patients Can Hasten Dying":

 http://bioethicsdiscussion.blogspot.com/2008/01/should-physicians-provide-information.html

Now Dr. Terman has offered us all an interesting addition to his previous suggestion to "Natural Dying" (stopping life-sustaining treatment and food and fluid if those treatments would be extraordinary and disproportionate, for example at some point along the downward trajectory of a terminal illness that may include unbearable pain, or lingering for many months or years if suffering from dementia.)

 In addition, he suggests voluntary vital organ procurement for donation, an act that would end the patient's life at a time when the process of Natural Dying has become clearly irreversible, while waiting for the patient to die would result in damaging the organs so they could no longer be gifts of life.Even though Dr. Terman’s suggestion may provoke some ethical or legal challenges, both he and I think it would be useful to obtain some feedback from people from a variety of backgrounds who may face such decisions on a personal level. (I personally have not as yet taken a position about it.) Dr. Terman tells me that we can expect his responses to your comments here. This issue is important enough that this suggestion and the link to Caring Advocates be offered to public for the purpose of furthering discussion.  So here it is on my bioethics blog for my visitors’ consideration and discussion. ..Maurice.

 

When asked by the Mayor of the Munchkins about the Wicked Witch of the East (on whom Dorothy’s house fell), the local Coroner answered: She is “morally, ethically, spiritually, physically, absolutely, positively, undeniably and reliably…” as well as “really and sincerely” dead. [L. Frank Baum’s, The Wizard of Oz, 1900.] Back then in “Oz,” death simply meant the cessation of heart and lung functioning. Today, modern medical technology can prolong a person’s biologic existence after major organs are so diseased they cannot function on their own, without “life-support” or “life-sustaining treatment.” The result has led to choices and conflict about which Mr. Baum could never have dreamed. 

Since 1968, we have been abiding by an ethical concept called the “Dead Donor Rule.” This means that physicians will never harvest organs from live patients. The political purpose of this rule is to give people confidence that if they cannot speak for themselves, others will not give up on them because they want to harvest their organs. Clinically, however, some physicians and ethicists consider it a fiction that patients are really “dead” by definition. They point out many ways in which such patients are still alive, although very sick, absolutely unconscious, and totally dependent on machines to remain… (yes, alive). Others argue that the neurological criteria for “brain dead” are sound in one important sense: clinical experience shows that patients who fail the test never regain consciousness. 

A further problem arises if a state or an institution uses a different set of criteria, one based on the functioning of the heart rather than the brain. Here, physicians take the patient off life-support and then they wait a certain amount of time to see if -- without medical intervention -- the heart will start again by itself; that is, without medical intervention. If the heart does not re-start itself, then the process is considered irreversible so death is inevitable, and then a doctor can declare that the patient is “dead” –according to local protocol and the current local definition of death. Note: In case you didn’t know, you are “legally dead” if and when a physician declares that you are “clinically dead.”

Here are two potential problems: First, does it really make any sense to say that the patient is dead based on “irreversibility” when the heart can, and in fact may be restarted with medical interventions? The reality is that such hearts are often donated to other patients and are then restarted. Second, how long should physicians wait to see if the heart can restart itself? Some people find this part scary. There is tension here between A) waiting long enough to give the donating patient a chance to live, and B) not waiting too long so that the organs become unusable because they were deprived of oxygen. Hence, the Institute of Medicine recommends waiting 5 minutes. Yet the Children’s Hospital in Denver waits only 75 seconds. Strictly speaking, that means a patient would be “dead” in Denver but still “living” elsewhere based on this criteria. By the way, these criteria have two names: “Donation after Cardiac Death” and “Donation after Circulatory Death.”

Suppose there is a way for you to decide, to describe, and to memorialize your own criteria so that others will know at what point you would NOT want life-sustaining treatment, and would therefore be willing to die? In that case, it would be YOU -- not a state, or an institute, or a hospital (which could change its definition between now and when you become unconscious and reach this end-stage disease) -- that would determine when you would let nature takes it course so that you could die and before that, donate your organs. 
Note that the decision that it is time for Natural Dying is not a decision to die, but to let the underlying disease takes it course when further treatment -- including food and fluid -- are deemed by the physician and the proxy/agent, to have become extraordinary and disproportionate.  Then... if the patient passes the point of no return, why should we let his/her body dehydrate so the organs are not usable, when they could be gifts of life to several patients? From what you have learned so far:

Question 1: Would you have more confidence in your own criteria, or would you rather depend on the potentially changing criteria that others will have established, when “that time” comes? The living will that determines “WHEN” can importantly choose a way to die called “Natural Dying.” This means to stop not only stopping all life-sustaining treatment including tube feeding but also assisted feeding and assisted drinking. Of course, you would always receive all the comfort care you would need to die peacefully by medical dehydration. This includes agents to reduce your thirst. (Hunger is rarely a problem.) Most people die within two weeks.

Question 2: Can you imagine conditions such as untreatable, unbearable pain and suffering, or advanced dementia, or a permanent coma -- where you would opt for “Natural Dying”? 

Now suppose your medical condition reached the state where you were ready for “Natural Dying,” and that, as a completely independent decision, you also decided to donate your organs.

Question 3: If you are conscious when you begin your total fast, then after several days of fasting, you will fall deeply asleep. After that point, you will not be able to change your mind to resume eating and drinking… So would you be willing to consent (in advance) to donate your organs? (Anesthesia will be provided to make sure you do not experience any pain.)  

Question 4: If your end-stage condition was devastating brain trauma or Advanced Dementia, you could have previously authorized your future physician and your proxy/agent to jointly determine “WHEN” you meet your own criteria for “Natural Dying.” Once they decide, your dying will be inevitable… So would you be willing to consent (in advance) to donate your organs? (Anesthesia will be provided to make sure you do not experience any pain.)   

Question 5: Overall, which set of criteria would you be more comfortable with: one established by a state, or institute or hospital…  or one that you decided for yourself?

Question 6: If someone suggested that your consent to donate organs when you reach your own criteria for “Natural Dying” violates the “Dead Donor Rule,” would you agree or disagree? Could you offer an argument to support your view?

Question 7: If someone suggested that your consent to donate organs when you reach your own criteria for “Natural Dying” is a form of euthanasia, would you agree or disagree? Could you offer an argument to support your view? 

Question 8: Do you have any other comments or questions?

(Note: the Natural Dying Living Will is available from a non-profit organization, whose website and email address are www.CaringAdvocates.org  and CaringAdvocates.aol.com)