Medical Ethics PHIL 148 @ Binghamton University, Sum 11


News Article: Euthanasia

Immigrant's Health Crisis Leaves Her Family on Sideline

Rachel Nyirahabiyambere, age 58, has been in a persistent vegetative state ever since she had a stroke in April of 2010. In February, her feeding tube was removed based on the decision made by her court-appointed guardian, Andrea Sloan.

What makes Rachel's case unique is the fact that because she is a recent immigrant to the United States and she has been here for less than five years, she is ineligible to receive Medicaid and thus, is uninsured. Prior to her stroke she was employed at a nursing home and received medical benefits, however, she had to leave this job (and lose the health insurance) when she moved to provide childcare for her grandchildren.  After her stroke last April, Rachel remained in a vegetative state at Georgetown University Hospital for about seven weeks; at which point the hospital began attempting to discharge her and instructed her family to locate a nursing home for her or to hire in-home care.  When her family was unable to provide the funds for this because she was uninsured, they found themselves in a precarious situation with the hospital.  In November of 2010, the hospital took action to give Rachel a court-appointed guardian; although her sons fought to retain control over their mother's care, Ms. Sloan was appointed as guardian and soon transferred Rachel to a nursing home after getting the hospital to cover the costs (an option that was not given when Rachel's family had initially came into conflict with the hospital).   Ms. Sloan then placed Rachel in hospice care and decided to have her feeding tube removed February 17th and as of March 3rd when this article was published, Rachel was still alive.

An update to the story

Rachel's feeding tube was reinstated after an advocacy group petitioned a Virginia judge on behalf of Rachel's family deciding that the tube be reinstated until all of the legal issues were sorted out.

Wow, I'm sorry if my summary was a bit on the long side, but I had to read the article a few times to get the facts straight since it jumped around a bit, so I thought it might be helpful to lay it all out chronologically 🙂  I chose this article because I found the case to be pretty unique, compared with many of the examples and cases given in this week's readings.  I think most of us have come to agree that in cases where a patient is unable to make decisions, that decision making power should automatically be given to the family. Yet, in this case, it seems like because of Rachel's family's inability to pay for her care-- they were legally denied this decision making power.  And as a consequence, Rachel's feeding tube was removed against their wishes.

Is this fair? Is this even ethical?

I think that from a utilitarian perspective, Ms. Sloan's decision would likely be supported.  Given the fact that Rachel is unlikely to make any sort of recovery, the utilitarian would say that Rachel is using resources that could be better directed to other patients with better chances. Additionally, given Rachel's state, her family is likely to already have undergone some degree of a grieving process similar to the process one goes through when someone passes away.  Letting go of Rachel and removing her from the feeding tube may actually help her family in coping with their loss. This would all be likely permissible under rule-utilitarianism especially since Ms. Sloan was appointed guardian by the court.  I feel that the deontological perspective might offer a very different analysis of this situation.  Given that it is extremely unclear as to what Rachel would have wanted, Ms. Sloan may be perceived as seriously encroaching on Rachel's dignity by making this decision without any clear evidence of her wishes. I believe that Ms. Sloan is also violating a respect for the views of Rachel's family in the matter and thus, her actions would likely be deemed unethical from deontological standpoint.

  • Are there any other philosophical perspectives that would offer a clear ethical solution to this case?
  • Do you have any disagreements with my analysis or additional aspects to add that I haven't considered? Feel free to share 🙂

This article really reminded me of the points brought up this week's reading, Hwang: Rational Suicide and the Disabled Individual-- Hwang made a point of discussing how social influence can have a huge bearing on the way ethical "right-to-death" issues are handled.  Although nonvoluntary euthanasia wasn't expressly mentioned, a few of the cases mentioned dealt with disabled people (wishing to engage in both PAS/AAS) whose quality of life was decreased many times due to the lack of funding that they received. For me it raised questions about whether or not it was justifiable for society to drive people into such an unfortunate state, and then consent to their "right to die." The connection may not seem that clear, but had Rachel been able to receive Medicaid, her family would have been free to keep her on life support as long as they needed/wanted without any legal struggle. Yet, in this respect because of Rachel's citizen status she and her family were failed by the system. Leading her family to be pressured by the hospital and court to make a decision and when they were unable to, someone was assigned to do it for them.

  • Does this case have the potential to set dangerous precedents in the future?
  • Where is economic reasoning's place within ethical decision making? Should it even have one?
  • After reading the article, were you able to discern any possible conflicts of interests in the case?
  • Had you been Rachel's family, how would you have reacted to the guardian being appointed by the court and does this have any bearing on your opinion about the case?

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  1. This is a hard decision to make because I feel like especially in the United States our health care system is questioned quite a bit. The thing is, they are right; the health care system is a business and the need to make a profit off of it. The fact that she was only a new citizen hurt her because she was unable to get the support of the government. When keeping someone alive for that long it cost a lot of money and there are a lot of people who have to take care of her. One could say why we should put all this energy and money in a person who has no quality of life left. The problem is the I feel is that this were not her wishes and this was not her family’s wishes and I feel as though they should have the decision on something like this.

    I feel that this case would be different if the patient had insurance because than the hospital would be getting money for everything that they were doing. I think this case displays more of how injustice the systems in the United States are and that without money people do not care about you. In another case with the patient has health care they fight against families to keep the person alive. Do you think her not having health insurance affected the decision? Do you think the hospital just wanted her to die with dignity?

    If I was Rachel’s family I think I would have wanted to give her more time because she never told me how she felt and I do not think it is right to take another person’s life unless they voice that opinion. I know in my family we discuss such things, so if this were to happen I would know the decisions that would have to be made. I encourage others to do the same so that it is not that someone has to end another’s life, but instead just respect their decisions.

    • @Jacqueline- yes I agree that although money is an is an issue, I don’t think it’s any reason to usurp a family’s rights in this situation. Money really isn’t everything (despite what a utilitarian may argue) and I think it’s unfair for an ethical decision to come down to economic concerns, and in my opinion, that court decision set a possibly dangerous precedent for future cases.

      I think that her not having insurance one hundred percent affected the decision, if she had insurance then the hospital never would have taken issue with the whole situation. Perhaps a reason for Rachel not discussing this with her family is probably because she was so young and didn’t have any signs that would have indicated that there was anything wrong with her.

      Do you think the situation would have been different if Rachel’s family was able to come up with concrete evidence (such as a living will, etc) that expressly stated she not be taken of life support? Would Ms. Sloan still have been able to make the decision that she did?

      • @Marisa, the sad truth is that though money should not control everything, it does. I think even if they found a living will that they still would of tried to go to the courts and have the “plug pulled” because it was costing too much. In my own opinion I think they should respect her decision and her family’s decision and allow her to do whatever she wants, no matter what the cost, but the hosiptal is a business and though they are suppose to be helping people, they still think of themselves and how they will gain and lose from a situation.

  2. This was a good article choice. I believe removing the feeding tube was the right thing done in the wrong way. I feel the hospital acting solely based on greed and they are a business but they are in a human business and should’ve acted accordingly. They should’ve made the offer and arrangements they made after they ripped away the rights of the family instead of pressuring them into a decision they did not want to make. This would have given them the time to grieve properly and with the experience and education they may make the correct decision on their own.

    I don’t believe there is a straightforward clear ethical resolution to this problem. Utilitarianism might say the tube should be removed, deontology could go either way. Virtue ethics would say the hospital is lacking morals. Care ethics could also be argued either way. I think the only thing that could be said here is that the tube should not have been put in in the first place. Maybe that’s too easy and simple but it would’ve avoided this terrible situation. It is clear however that economics should not have any place in an argument like this. I believe it would violate every principle we have learned to consider the expense in this situation. Furthermore it seems to have been the only thing the hospital and courts were considering when they took the decision making right away from the family. I also think the financial undertones in this entire thing do produce a conflict of interest. It says in the article that “Ms. Sloan, who said she is not being paid by Georgetown University Hospital or by anybody else at this point.” Does that mean that at some point the hospital was paying her? Huge conflict of interest.

    • @Tasha- I like the way you summed this up as being “the right decision done in the wrong way”–I found the fact that the hospital only offered to pay for the nursing home, after the court decision was made to be pretty outrageous. I agree Ms. Sloan’s involvement seemed a bit sketchy to me, as if she was put in place with specific assurances that she would make “the right” decision in the opinion of the hospital. I also found it very significant that the article quoted that: “Some guardians said they withdrew life support only if they felt certain about what the patient would have wanted”– I believe that Ms. Sloan had very little information to support that removing the feeding tube was what Rachel would have wanted.

      As to another conflict of interest- I see that Ms Sloan was appointed Rachel’s guardian on the recommendation of a lawyer who had reviewed the case for the court and had been paid by the hospital, which seems very suspicious to me!

    • @Tasha- since the hospital is “not a charity,” do they have any right to look out for their financial interests at the expense of their patient’s rights and welfare?

      • I understand that they wanted to use those resources elsewhere however it is compeltly inappropriate to consider their profit margin over the wishes of a patient and thier family, especially when later after they got their way they paid for what the family had always wanted.

        • @Tasha I agree, there must have been some other way- like some sort of advocacy fund, etc. It seems almost inhumane that, despite the fact that care for Rachel was considered “futile,” the hospital couldn’t find any other measure to proceed with than stripping her family the rights over her. It’s almost twisted, I feel like the only good reason to take away a guardian’s rights is if they do not have their charge’s best interest at heart; yet in this situation, a caring family was rendered helpless and a guardian was put in place who seemed to have little regard for either Ms. Nyirahabiyambere’s wishes or cultural preferences.

  3. All I have to say to this is article is that these people are gambling with life. First and foremost, it is completely wrong and in many ways unethical for the courts to appoint another guardian in place of the patient’s original guardian in the matter at hand. Not being able to produce money for the care of the patient is not a good enough excuse to justify this act, especially when the hospital staff knew all along that they could cover the expenses. It’s almost as if they knew that the family was suffering financially and did not want to help at all. This reminds me of a little scenario that goes a little something like this: “I know you need help but I do not find satisfaction in helping you so therefore I will refrain from doing so. But because me not helping you is affecting me indirectly (the bill continues to increase as the patient continues to stay in the hospital) I am going to react by causing you to lose something as well; that we we’re both in the same predicament.” Only the hospital ended up having to help them anyway by paying for the cost of the nursing home. I wonder if they thought that the court would somehow pay for it or force the family to pay (or even reimburse the hospital ). I wonder if they knew all along that they could help out but decided to be arrogant and watch the family suffer anyway. I know that they are medical professionals and should not condone in such acts but hey we are all human and it happens.

    • @Jennifer- I agree, I feel like that there were a myriad of other options that the hospital had that did not involve a court process where Rachel’s family’s guardian rights were usurped, rendering them totally powerless in decisions regarding Rachel’s end of life care. I do understand that “futile care” in cases where patients were in a constantly vegetative state can be viewed as a financial drain- but I think the amount of money that the hospital may have had to spend on Rachel’s care is probably a tiny blip on the radar in the grand scheme of hospital expenses and certainly not worth dragging up this huge ethical mess.

      How do you think this applies to patient-professional relationships? Do you think that once Rachel entered into a vegetative state, the doctor/hospital’s inability to help freed them from being responsible for her care?

      • I think that once the patient is within the vicinity of the hospital that the doctors are obligated to perform their duties as caretakers. Being in a vegetative state doesn’t make her case any less significant than another patient who is recovering from surgery. Yes, the circumstance may be different but she should be granted the same if not similar treatment in terms of respect and autonomy. And who is to say if her vegetative state is permanent? She may recover from this tragedy. No one knows; only time will tell. I think that a patients autonomy should never be disregarded until they are proclaim dead (that means not breathing and without complete consciousness). The physician and the hospital should hold true to their word and provide what they truly feel is the best for this woman. These decisions, in no way, should be influenced by money.

        • @Jennifer, very interesting perspective. I don’t know much about people who are in vegetative states- but it seemed that from the article in was “SOP” for a hospital to sign people in vegetative states out to nursing homes etc for care. Either way though, you’re right in this situation it’s clear that the patient’s autonomy was violated no matter how you look at the situation, that’s what it comes down to.

  4. As you stated, the utilitarian would say that euthanizing Rachel is for the greater good since she is using valuable resources that could be better used by other patients with higher chances of recovery. The way in which they went about stopping her treatment should have been given further thought and consideration. Taking this as a case by case basis, the family’s culture has a taboo against killing someone by starvation. They have also had to survive a war and a refugee experience and starving is something that probably brings back unpleasant thoughts of their past. Perhaps another method of euthanization should have been discussed with the family in order to appease them.
    By taking the decision-making process away from her sons, the court is setting a dangerous precedence for future cases like this. There is the danger that in a melting pot of a country such as America, culture will disregarded when treating a patient. Instead economic status is highly regarded creating a standard and a biased setting for medical care. A poorer person should not be denied medical care, especially since taxpayer money goes to medical facilities.
    There is a definite conflict of interest here. Ms. Sloan was appointed guardian over Rachel on recommendation by a lawyer that was paid by the hospital. It is obvious that the hospital was interested in stopping her treatment since Rachel was a burden on their resources. If it weren’t for this small fact, I would be pro-euthanizing Rachel as long as it wasn’t by removal of her feeding tube in order to respect the family’s culture. The fact remains that she is a burden on the medical facilities, even a slight burden on her own family and since her chances of recovery look slim and she is not experiencing life in a vegetative state, her euthanization would be best for all.

    • @Selisha, I certainly agree that a poorer person should not be denied medical care– i think that Rachel and her family got “screwed” by the system especially since she was not in the country long enough to be eligible for Medicaid.
      I really liked that you brought the cultural aspect up! In some of the ways emails that Ms. Sloan was quoted in the article, it seemed as if she was being almost sarcastic/disrespectful toward Rachel and her family’s culture, especially when she said: “You have asked for understanding about your culture and that is exactly what I am trying to do. Feeding tubes are not part of your culture, are they?”
      Do you think that the lack of cultural understanding from both sides has perhaps added to the conflict?

      • Yes the lack of cultural understanding from both sides has made the situation worse. Ms. Sloan obviously does not understand their culture. I doubt she has ever had to fear starving to death and so removing a feeding tube is not something that seems so bad to her, especially when she is being pressured by the hospital to remove it. Similarly th Nyirahabiyambere’s do not fully understand the American culture of excess and how little food means to Americans. America is after all the fattest country in the world, and legitimately so. Americans do not the value of food and the Nyirahabiyambere’s do not understand this American characteristic. That is also why I suggested that another method of euthanization be proposed. It may be able to solve this conflict because it seems like the removal of the feeding tube is the biggest issue and is what is emphasized.
        Good observation about Ms. Sloans sarcastic and mocking tone when she speaks about feeding tubes in the Rwandan culture.

        • The reason they don’t use another form of euthanasia is because that goes into active euthanasia, which is illegal in most countries while removing the feeding tube is still passive euthanaisa which is legal. It also gets into all the ethical and moral conundrums.

          • @Tasha/Selisha- Good point, Tasha– I think that the fact that the feeding tube was the only way to end Rachel’s life is probably a large part of the reason why the Niyrahabiyambere family struggled with the decision for so long.

          • @Tasha I understand what you’re saying but once the feeding tube has already been placed and administered, isn’t it then active euthanasia to physically remove it?

  5. @Marisa, great analysis. I feel like deontology would say that what Ms. Sloan did, as her guardain, is morally sound. Ms. Sloan has been appointed as Mrs. Nyirahabiyambere’s court-appointed guardian. As her guardian, she has duties that she needs to fulfills. Since morality in deontology is based on fulfilling one’s duties or following rules and regualtions; Ms. Sloan did exactly that. As her guardian, she is allowed to make decisions regarding the welfare of the patient. She choose to place Mrs. Nyirahabiyambere in hospice care which is okay since it is a part of her duties. She also then deemed it okay to remove the feeding tube, which according to deontology is okay, since it abides by the rules and regulations of being a court-appointed guardian. The consequences and outcome are irrelevant in deontology and so cannot be taken into consideration when deciding the morality of an act.

    Marissa, you also talk about how utilitarianism would say that resources should be saved for other patients just in case they have a better chance of survival. I feel like this is one of the few times deontology and utilitarianism will cross paths. By saving resource for other patients in the future, Ms. Sloan fulfilled her imperfect duty according to deontology.

    I feel like this case was just unfortunate for the family. It’s just unfortunate that they recently immigrated to the United States and were still adapting to the culture shock. In the article, one of the sons even said that allowing a person to die by removing the feeding tube is unheard of in the Rwanda culture. It is also unfortunate that Mrs. Nyirahabiyambere was just a handful of years shy of being able to receive medicaid to fund her hospitalization. It is even more unfortunate that Mrs. Nyirahabiyambere had to fall so sick at the tender age of 58 here in this country where most of her contemporaries would be meticulously planning their retirement. She came here for a better life; however, succumbed to her stroke and fell into pvs. I feel like this case has too many attributes that work against the family to set any sort of dangerous precedents; in other words, the chips just didn’t fall into place.

    Looking at this situation from the hospital’s point of view, it is understandable to see what they did. How many patients can they really keep on saving without any sort of substantial payment? How do you decipher which patient needs to leave in order to make room for a future patient that could possibly be in a worse case. Where is the line drawn? Every patient and every family has a story that makes them unique and makes their specific case worth saving. It is simply unfortunate that this family from Rwanda had to fall into this predicament.

    • @Ralph- I found it the way you used deontology to interpret this case to be quite interesting. From a legal standpoint, yes Ms. Sloan is completely within her rights/responsibilities to make the decision to take Ms. Nyirahabiyambere off of life support. I guess when I read the article, I took issue mainly with how Ms. Sloan had been appointed, especially since she had been recommended by a lawyer who was paid by the hospital. Because of her appointment, a family was totally stripped of their right to make decisions about a loved one, simply because they were unable to cover the costs of Ms.Nyirahabiyambere’s care.

      From a deontological perspective, would you find the hospital’s actions to be morally justified in this situation?

      • @Marisa, from a deontological perspective, I feel like the hospital’s actions can be both moral and immoral depending on how you view it. The hospital has a perfect duty towards Ms. Nyirahabiyambere to see to it that she gets better. By removing any sort of medication or treatment, the hospital is not fulfilling its duty of doing “everything” they can to make sure she recovers from her illness. On the contrary, the hospital also has a perfect duty towards the other patients that are currently in the hospital. If the nursing and medical staff is tied up with Ms.Nyirahabiyambere, which could very well be a lost cause, their time and efforts could be better spent fulfilling their duties towards other patients who have a better chance of survival. In this scenario as well, the hospital also has a duty to be able to fund themselves. This sort of treatment that Ms.Nyirahabiyambere is undergoing is very expensive, so by getting the lawyer to appoint a guardian, the hospital is fulfilling their duty of retaining money in the long run. The hospital also has an imperfect duty towards the patients who will come to the hospital in the future. Resources, money, time, and efforts can be saved for those patients who are in a bad situation as well but have higher chances of survival.

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