Sunday, February 2, 2014

Should this Jehovah's Witnessed have been Transfused Blood?

Autonomy is a bedrock ethical principle in medicine that has supplanted medical paternalism.  Patients have a right to make their own medical decisions and are entitled to know the advantages and drawbacks of all reasonable options.  Clearly, informed consent cannot be given if the patient is only partially informed or has been given a slanted presentation by the physician.

When a patient does not have the capacity to provide consent, then a surrogate is used.  This individual is charged to make the decision that the patient would have made if the patient were capable of doing so.  Some argue that the surrogate should decide on what he feels is in the patient’s best interest, which may be different than what the patient would have preferred.

Can Christian Scientist parents deny lifesaving treatment to their children? The courts have properly ruled for the children in many of these cases.   These decisions may be traumatic for loving parents who feel that conventional medical treatment may cause an irrevocable spiritual catastrophe.  Is the situation more complex if the child is 15 or 16 years old and does not want surgery or chemotherapy?  What about a 17-year-old?

I was asked to see a patient recently who was profoundly anemic, having lost about 2/3 of her blood.  Ordering blood transfusions would have been a reflex for any physician.  The patient was a Jehovah’s Witness.  Practicing Witnesses will refuse blood transfusions even at the risk of their lives.  I have treated many of these individuals over the years and respect their right to make informed medical decisions.  This patient, however, was mentally retarded and her sister was making decisions on her behalf.

Red Blood Cell, White Blood Cell and Platelet

At the sister’s request, no blood transfusions were administered and the patient survived.  I wondered if this case was ethically problematic as the sister was denying care that may have been lifesaving to a patient who could not express an opinion on the issue.  Perhaps, she would not have wanted to die or might not have been a practicing Witness at all.  Should the sister, despite noble intentions, have been entrusted with this decision?


I think that had we decided to ask a court to rule on this issue, that blood may have started to flow.

8 comments:

Anonymous said...

It's just as well you didn't get a court to force unwanted treatment. After all, the patient did survive and escaped the often underestimated but sometimes very serious short-term and long-term risks of blood transfusion. Clinical trials are now showing that the culturally approved use of aggressive transfusions in less severely anemic patients has little benefit and has done a lot of damage. It would be a shame if it became more difficult to generate data points questioning the necessity of standard treatments because families who tried to refuse them were liable to compulsory treatment under court order.

Anonymous said...

I commend your descisions to treat without blood. Bloodless treatment has become the gold standard of treatment due to the many problematic medical issues associated with blood products. I understand and admire the ethical conflict you felt as it shows you are concerned about doing the right thing. However, when you entered medicine you undoubtedly did so knowing there would be such ethical challenges and the negative effect upon you of conflicted views must be placed in the background as you did. Unlike many medico-religious issues that are reported on by the media, Jehovah's Witnesses want good medical care for their families. They don't believe God will miraculously cure them with prayer and they don't have martyr complexes. So often however we read in the press that a person died because they didn't take blood. Unfortunately in life there are no redos so the same person who died without blood may have also died if they had taken blood. There is no way to know after the fact.

Recently in our area the press reported on a shooting victim who wasn't yet a baptized Jehovah's Witness, but was mistaken for someone else and shot eight times. The press reported that he died because of the refusal to take a blood transfusion rather than from being shot eight times. Nevertheless the shooter is now being tried for murder.

As a parent I understand the difficult decision made by the sister in this case. The care giving relative undoubtedly was concerned both for the medical and spiritual care of her sister.

in modern society, certain things are viewed as worth dying for. Policemen, firemen, and soldiers risk their lives and often the lives of others for reasons society views as worthwhile. They are viewed as heroes because of their actions. Howeve, should society view the very same types of actions taken for what society views as a less worthy cause (e.g. obeying a religious tennet) the person is viewed as engaged in child endangerment.

The courts are supposed to be objective arbiters in such areas, but judges are subject to the same biases as the rest of society.

So while these issues are certainly difficult, where there are other medical options that can help medically, even if not to the same degree of the medically preferred option by the doctor, I encourage those in the medical profession to respect the wishes of Jehovah's Witnesses.

Michael Kirsch, M.D. said...

I appreciate the thoughtful comment above. Every capable (competent) individual has a right to refuse treatment, even at the risk of life. The physician is obligated to ensure that this patient has been sufficiently informed.

How would my anonymous commenter opine on the following hypothetical vignette?

A 2-year-old child of devout Jehovah's Witness parents is critically ill. The medical facts are that it is nearly certain that the child would survive if blood was administered and it is nearly certain that the child would die without them.

(1)Is it ethically permissible for parents to deny lifesaving treatment for a child who is not competent?

(2)How should a judge rule here, in your view?

Anonymous said...

Dr. Kirsch - I am the first commenter above. I would agree that the child should be forcibly given blood - assuming that survival means survival with quality of life. However, the vignette you offer now differs from the case you wrote about in two respects: first, the patient is unable to hold religious beliefs by virtue of extreme youth, and second, for purposes of argument, it is "nearly certain" that she would die without blood. (The same was not, evidently, true of the original patient; just because a doctor says you "need" something famously doesn't mean you will die without it.)

Your essay did not explain why the woman herself could not be asked, in simple language, about her beliefs. Was she so profoundly handicapped that she was permanently unable to communicate, or was she unconscious or delirious because of her temporary medical condition? If the latter, then neither you nor a court would have any more reason to assume the family were untrustworthy, if they said she was a regular churchgoer and would want to do what their church prescribed, then you would have in the case of a cognitively normal person.

If the former - if the woman's mental capacity was no greater than that of a toddler - then it's unlikely that she could personally be a true believer in her family's religion. This would make it more reasonable for a court to order treatment. However, it is not always wise to inflict aggressive medical treatment upon a person who is profoundly disabled, whether by congenital problems or by dementia, stroke, car wreck or what have you. Do you know what her quality of life is or will likely be in future? Does she have other incurable health problems that require frequent medical interventions?

I recognize that some refuse to consider such issues because of the "slippery slope" argument. However, many people would prefer for themselves an earlier death to additional years lying in a bed in an institution waiting for their next procedure. Extending that preference to a relative who was facing the same options is seen by those people as an act of mercy, not neglect. It seems to me that you should be able to assure a court that you are "saving" a forcibly treated patient for the sake of a future that you believe will have a net positive value for her, as she herself experiences it. Some profoundly handicapped people do have such lives and some, sadly, don't appear to.

Michael Kirsch, M.D. said...

I appreciate your comment. I agree that the hypothetical vignette I offered in one of my comments above is clearer than the example in the post. The patient in the post was not capable of providing informed consent.

As you point out, the definition of quality of life is a complex and difficult entity. Many folks who face great physical challenges
want to live. We have to be cautious about deciding for others if their anticipated quality of life merits medical treatment.

My view on violating parents' wishes to save a child or incompetent individual is much more firm when the risk to life is very high, acknowledging that there is never certainty in medicine. For example, if parents were to refuse an antibiotic for a benign infection of their young child for religious reasons, the parents should be given more latitude as the health risk does not demand that their view be bypassed.

Anonymous said...

Thanks for your reply! Someone who does not have the mental capacity to provide legal informed consent may be able to practice or believe in a religion - I'm not trying to be mean by saying this, but it really doesn't require a lot of wattage. If she is too profoundly handicapped to understand or communicate at all, then someone else may need to make judgements about her quality of life. I agree with you that that is very tough and perhaps controversial, but a policy to aggressively treat everyone no matter how miserable his condition also involves a value judgement on the subject. I would hope that we could treat non-verbal people as well as we treat sick or disabled pets. They can't verbally express how happy they are, but most guardians can tell the difference between a pet who can still enjoy social or sensory pleasures and one who does nothing but lie in a basket waiting to be cleaned up and spoon-fed, and we recognize that life-prolonging measures do the latter group no favor.

Anonymous said...

Dear Dr. Kirsch:
I'm the commentor from February 6th.
My challenges as one Jehovah's Witnesses started in 1966 at the age of 14 when I was diagnosed with Osteosarcoma in my upper left thigh. Every doctor my parents could find said I would die in surgery when they amputated my leg, the only possible treatment back then for this cancer. We ultimately found a doctor who was willing to do the surgery without blood but ONLY after I was questioned and viewed as a mature minor and ONLY because they believed I was going to die of the cancer anyway, as only 5% of those with this cancer survived back then. A general surgeon did a total hip disarticulation. I lost just over a pint of blood and am still living at age 62. You see doctors don't know who will live and who will die.

I have 5 children now. Would I change my view if my own child had serious medical problems? I have a daughter with VERY serious medical problems which have gotten steadily worse from age 7 when she had her first brain surgery. She had a pineal cyst that caused overwhelming headaches. The cyst was blocking an aqueduct in the brain causing hydrocephalus. She needed to have a 3rd ventriiloscomy. We had to find a doctor who would do the surgery without blood. We did and she recovered only to come down with hydrocephalus not related to cerebral circulation. She's now had five brain surgeries, all of which were done without blood transfusions.

During the ensuing years she came down with severe mixed connective tissue disease, then postural orthostatic tachycardia syndrome and most recently Crohn's disease . She's now 22 and totally disabled.

We have done everything in our power to get her the best medical care possible, including, at great expense maintaing the broadest health insurance possible, taking her to teaching hospitals and doing thousands of hours of research in medical journals about her many conditions so we could make the best decisions for her.

Specialists said she didn't have hydrocephalus because she didn't have papiledema. She needed a spinal tap to reduce spinal fluid pressure but the doctors at the children's hospital where I live refused to do it even though we had a prescription from a nationally known neurosurgeon. I finally got it done only by contacting one of the corporate directors of the hospital I knew personally. When they did the tap her spinal pressure was 3 times normal. If we had listened to those doctors my daughter would likely be blind and deaf, that is if she survived at all.

A whole group of Rheumaologists at a major children's hospital here in California said that my daughter had psoriatic arthritis. They tried using Embrel and other drugs in that family of drugs. My daughter had severe reactions. I repeatedly told them I didn't believe they were diagnosing correctly. Finally when my daughter aged out of the pediatric rheumatology department and went to a rheumatologist specializing in treating adults we finally got a correct diagnosis and the right drug to treat her and the drug only cost $20/month.

Why did I give these details? Because while doctors MAY have more medical knowledge than their patients, they don't KNOW what is best for the patient. They have specialized training but that training often causes them to think they know what is best for the patient. It doesn't mean that. More is unknown in medicine than is known. The doctor nearly always knows and cares less for the children than their parents. Yes there are exceptions, but they are not the norm.

When a doctor treats a child whose parents want treatment in harmony with their beliefs the doctor is following his oath to do no harm and recognizing his own limits.

I hope you will continue to treat Jehovah's Witnesses' children without blood knowing that you did the best you could for the children in harmony with the values of the family involved.

Michael Kirsch, M.D. said...

First, I want to express gratitude to the above commenter for sharing such poignant and thoughtful remarks. The paragraphs contain many lessons for me, and likely for all readers. I quite agree that physicians have limitations and can and will be dead wrong on major medical issues and predictions. This occurs because physician are members of the human species and are fallible. In addition, disease can be fickle and unpredictable, veering far from the expected script. In addition, there is no substitute for zealous and informed advocacy from the patient's family or very close companions. You have illustrated this point beautifully. I try to treat patients sensitive to their religious and cultural beliefs, which may conflict with my one. It's their choice to make. Respectfully, with regard to your remark that treating a child in a manner that harmonizes with the parents' beliefs raises some ethical quandaries that we have been discussing here. Thanks for reading and for writing.

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