Question of ethics

[leegardens]

Yesterday my PALS had an appointment at the Emory Clinic. We were there about four hours, the typical clinic visit. My PALS has a particularly aggressive form of ALS. He has fasiculations all over his body, some muscle atrophy, and he has bulbar onset. He has FTLD (dementia). However, he is strong and has no problem with any of his limbs although he does have some small weakness on his right side. He also has ALS fatigue. His lungs and diaphragm are affected and are going downhill fast. In his case it is the lungs and the dementia that are being affected the most. He will be getting a PEG sometime in August. Doctor X is standing by his original timetable of less than a year with the possibility of my husband having as little time as six months.

While there Dr. X asked me again if I would consider donating my husband's brain and spinal cord via autopsy for research. Doctor X says that my husband has a form of ALS that they haven't seen before and since my PALS is not being affected like other ALS patients they feel that by having his brain and spinal cord for analysis that they may be able to get some important gene information that could be used to help find out more about ALS. I must say that they ask me every time we go the the clinic. Has anyone else been asked to donate their brain and spinal cord for research?

I have been an organ donor since I got my driver's license at the age of sixteen. I truly believe that organ donation is a gift of life. My husband does not want to be an organ donor. However he has a conflicted view since he is no longer able to think staight. Georgia ALS has the slogan "Celebrate Life, Hope for a Cure". Every time my husband hears that slogan he says it should be "Celebrate Life, Find a Cure". So now I have to make a decision; the donation of my husband's organs could help towards finding a cure. This disease is dreadful and if I had ALS and they could use my brain and spinal cord to help one person: any of you, my husband, or my kids, to keep from getting ALS, then I would gladly make this donation. My daughter agrees with me that this would be the morally right thing to do. I believe that if my PALS did not have dementia that he might donate his organs.

So I have a question of ethics, should I make this decision for someone who is no longer competent? I will be going against his wishes if I do this. I know if there was a chance that my kids had this I wouldn't hesitate for a second and neither would he. Have any of you been asked to donate your organs for research? What do you think is the moral imperative here?

Thank you for your help.
Lee

 

[Al]

Hi Lee. My doctor here in Canada has asked for what they call a limited autopsy. They will need my body before 12 hours after death to get viable brain and spinal cord samples. All costs are covered by the research group. If my donation helped one stranger to not suffer as I and so many others have then it is worth it. If it helps my children or grandchildren then there would be no question. I always signed my drivers licence as an organ doner. This body isn't worth much but it might be to a future ALS patient. Do what you know is right. You will find solace knowing that you and he may have helped many that come after. Take care.

AL.

 

[jskierz]

Well said Al, I have already made the arrangements to donate my body to our medical school - as you say if it can help one person not suffer and go through what I am it will be worth it.

 

[brooksea]

Lee,

My husband has also been asked by Emory to donate for research. However, we don't get the question asked at every visit.

I would assume the progressiveness of your husband's condition makes them compelled to ask in such a manner.

It is my understanding that they just want tissue samples for research. Perhaps you know more about it, but I believe they told us this would not alter any "arrangements" at time of death.

Sorry you are in such a predicament. But, you are right, this could help PALS of the future.

 

[sharonca]

I regret not donating organs from my mother's body. She had Pick's disease which is rare and now I find that her aunt had it also. So maybe it is hereditary and it could have helped. I think it would be good to donate the organs and not have the second guessing. If you think your husband would make the decision if he were able to understand I think you would be honoring his life and giving hope to your family.

Sharonca

 

[CindyM]

Hi Lee- as I understand your question, it sounds like your husband, as he understand the situation given his current abilities, is against the donation but you are left to wonder what he might have thought during his better moments. This is a tough one and no doubt no matter what you decide you could end up second-guessing yourself, if you allow it.

I wish you the best. I am sure you will make the best possible decision and after you do, I urge you to let it rest. Your hubby knows you are doing the best you can under very trying circumstances. In the end he will agree in spirit, if not in words.

Cordially, Cindy

 

[georgia]

Emory info on Autopsy

Frequently Asked Questions about Nervous System Autopsy

Q. Why is it important to have an autopsy?

A. The autopsy is useful for both diagnosis and for research.

There is a particular need for autopsy tissue from well-studied patients with a variety of neurologic illnesses. The symptoms of different patients with neurodegenerative disease are not identical, and the changes in the nervous system tissue seen under the microscope vary from case to case. Comparison of a patient's symptoms with changes found in the tissue can lead researchers to a better understanding of problems experienced by patients with neurodegenerative disease.



Q. When should arrangements for an autopsy be made?

A. Although patients with ALS may live for many years, families should think about autopsy early in the course of the illness. It is important to make the necessary arrangements well in advance. For most people the time immediately following the death of a family member is very difficult, therefore a less than ideal time for making important decisions. Planning in advance ensures family members will have time to discuss this issue and explore any possible disagreements before the death of a loved one. The patient's doctor, nursing home personnel or hospice staff (if appropriate) and the funeral home director should also be informed of the family's decision.



Q. Who can legally give consent for the autopsy and when is this done?

A. In Georgia, except in coroner's cases, the person assuming custody of the body, such as the husband, wife, father, mother, child, guardian, next of kin (grandfather, grandmother, aunt, uncle, first cousin), or, in the absence of any of them, a friend of the deceased person may consent to the autopsy. If two or more persons assume custody of the body, the consent of one of you is sufficient legal authorization for the performance of an autopsy.

The autopsy can only be authorized at the time of death. This either is done by signing the Emory Authorization for Autopsy Form in person or by giving your consent by telephone to an authorized Emory Department of Neurology staff person (see inside front cover for number to call).







Q. Where will the autopsy be performed?

A. If the patient has been seen by Emory physicians and dies in the Atlanta area, the nervous system autopsy will be performed at Emory University Hospital by Emory staff and associates.

If the patient lives outside the Metro Atlanta Area and the body cannot be transported to Emory, the family will need to identify a local pathologist who is willing to do the nervous system autopsy and then send the tissue to us. The Emory Department of Neurology Autopsy Coordinator can help you locate a pathologist in your area.



Q. What will the autopsy cost my family?

A. For those patients seen by Emory physicians, there will be no charge for the removal of nervous system tissue or neuropathological examination. If it is not possible to transport the body to Emory and it is necessary to have an outside pathologist remove the nervous system, a fee may be charged to you for this service.

In addition, you should check in advance with your funeral director who may or may not charge you a fee for transporting the body to and from Emory Hospital.



Q. What effect will a nervous system autopsy have on funeral arrangements?

A. A nervous system autopsy should not affect any of the funeral arrangements. It is still possible to have an open casket if you wish. The removal of the nervous system tissue, under the supervision of a pathologist, does not leave any apparent marks.



Q. How do we obtain the results?

A. We will forward copies of the autopsy report to the patient's physician and to the family members you list on the Authorization to Release Autopsy Information form. The family may also contact The ALS Center at Emory University if they have any additional questions.

A Checklist for Family Members

Prearrangements

___1. Discuss tissue donation decision with all involved family members to be sure that you agree.

___2. Complete the Family Request for Autopsy Form (Form 1) and return to the Autopsy Coordinator at the address indicated on the form.

___3. Contact the funeral service that you plan to use and inform them of your family’s request for autopsy, the need for transportation of the body to and from Emory Hospital, and any extra costs that may be charged for this transportation.

___4. If your family member is in a care facility, or under the care of hospice, notify the staff and/or administration of your intention to have an autopsy performed.

___5. Keep this information handy and carry with you the laminated autopsy service card that provides a 24-hour number you can call at the time of death.

___6. If you have any questions about the autopsy arrangements or procedure, call the Autopsy Coordinator at the Emory Department of Neurology at 404-727-3251.



At the Time of Death

___1. Call the funeral director you have chosen.

___2. Call the 24-hour Emory Neurology Autopsy Service at 770-425-8021.

They will put you in touch with a staff person who will assist you in giving consent for the autopsy and will answer any questions you may have at this time.

 

[georgia]

organ donation

In terms of finding a pathologist in your area, she recommended
calling the local hospital to see if they had one on staff. Generally, if they
have a pathologist that is willing to be on call to do it, and they know it is
for research purposes, they won't charge for the procedure.

In terms of organ donation, most organs from ALS patients can't be used for
transplants. ALS patients can only donate corneal tissue, except under unusual circumstances.

 

[brooksea]

thanks Georgia for the clarification!

 

[hboyajian]

That is all really good, specific information. I wish My family had been informed about the possibility of donating the nervous system organs for research. I know my dad would have wanted that. Though in the end, I don't know how it would have worked out given the timing of his death (December 23rd). As it was, the arrangements took a long time to complete with Christmas and then New Year's delaying everything .... the doctor signing the death certificate, transportation to the funeral home, to the cremation being done. I recall my mom having a hard time with the thought of him being refrigerated all of that time. It might have been easier for her if there had been a good cause (research into ALS) to hang onto, or harder since it may have taken much longer. I don't know for sure.

I think it is important for a person with ALS to talk it over with his or her family beforehand, so people have time to get used to the idea. Everything is such a shock when you lose someone, even when you know it is coming, that one less decision to make in the moment would be helpful.

 

[CindyM]

You are so right! It is much easier to make as many arrangements as far in advance as possible!

Thanks for posting the information on having an autopsy and donating tissue.

 

[leegardens]

Thank you all for your advice and input. I feel that I know more about the process now. Hopefully it will be a long time away but I feel more prepared.
Lee

 

[lovelily]

Dear Lee...Thank you for this 'informative' report of donating your brain/organs.

Out side of my muscle/nerve disorder, I have neurological issues. I was asked by one neurologist if I would consider donating my brain to science, when I died. (I was hoping at the time that he wasn't thinking I was going at that particular moment. )

I think my husband was in shock! I told him I would.

I don't like to see anyone suffer. If there is something that I can do to help some one, then I feel I should. Michael Angelo had to dig in graves to get to see what human muscles looked like. I think we can give him the honor of helping doctors, as they strive for cures, after all his hard work!

take care
lovelily

ps..I hope that made some sense