Bioethics

Meg Blake

1. Scenario: Children being born as "Savior Siblings"-

Savior siblings are purposefully selected embryos to be a perfect match for an already born child that is sick and in need of donor organs.  These younger siboings are then made to be donors for their older siblings who are in need of transplants such as bone marrow,  cord blood from the moment they are born, and even organs such as liver and kidneys. Seeing as these savior children are under age they often do not have a choice to say no to being a donor for their sick sibling, their parents get to make the choice. These children are born purposefully to do one thing, save their sick sibling, which is how they earned their name of being a "Savior Sibling". As of right now, there is very little federal regulation regarding  Pre-Implantation Genetic Diagnosising. 

2. Jonsen Model Approach to Savior Siblings-

   • • Medical indication: This scenario involves not one single patient, but two, the sick sibling and the savior sibling. For the sick sibling, the indication can be life or death if they are unable to recieve whatever orgrans or transplant is needed. For the savior sibling, there is no medical need for them to donate for their own sake. There is more of a risk to ahrm the savior sibling by undergoing unneccessary procedures in which they ar losing organs and cells that they may need later in life.  It's a debate between saving one child while putting another at possible harm.  The goal of treatment is to save the sick child, rather than concern for the savior sibling.

     • Patient Preferences: In most of these scenarios the patients that this concerns are young and underage. This means that their parents are the ones who make the decisions and the young children do not have a a preference in their care. The sick sibling is not able to decline the transplant and the savior sibling is not allowed to decline the transplants. As the children get older and come to an age fo consent, their preferences will be taken into account, but the younger they are the less of a say they get.

     • Quality of Life: Quality of life for the sick sibling can be greatly imporved by recieving transpants when needed. Often times they are severely and chronically sick and in need of medical intervetntions to continue living. Without interventions, there is the a possibilty that they would die. For the savior siblign their quality life can be overlooked becuase their actions are needed for the greater good of their sibling. Often the procedures they go through are not goign to physcially harm them, however, they come with risks of infections and can potentionally harm them physcially in the long run. These savior siblings can feel used as they are often born with the single purpose of saving someone else, meaning they have no indivudual purpose in their parents eyes.

     • Contextual Features: There is a major conflict of interest as parents are in favor of saving their sick child at all cost, even to the point of putting a second child at slight risk. Medical professionals are also in a tight spot as we value the phrase "do no harm" to our patients. By putting savior siblings through unneccessary medical procedures it potentioally outs them at harm. However, by NOT following through on a intervention that is needed for the sick child the potentional harm could be death of the sick child. It's trying to choose the lesser of two evils. 

3. Utilitarism and Deontology: 

   • • Utilitarism- This approach focuses on consequences of actiosn and overall what will lead to greatest and most positive outcome. The view would be that saving a life is more importnant that potentioanlly causing harm to a healthy life. That being said, saving a sick child is more important than potentioanlly harming the savior child. The aspect of family dynamics would also be valued and seeing as parents would suffer more with the loss of a child  than this would be ethically moral.

     • Deontology- This approach looks at the duty and obligation that one must follow. Using this tehoery the savior child is seen as just a "means to an end" as they are created for the sole duty of saviing and being spare parts for their siblings. This raises the ethical concern that the savior sibling has zero autonomy in their own body and choices and is ethically wrong. 

4. Rubuttal:  While it is certainly tragic to think of a sick child as dying, it is not acceptable to bring a second child to life for the sole purspose of being spare parts for their sibling. It is a violation of their autonmy as well as well as posing a power-dynamic between the parents and the savior child. These children, once old enough to make their own medical decisons, can be led to feel guilty of they decline to follow trhough on a transplant that their sick sibling is in need of to live. 

Zúñiga-Fajuri A. (2018). Born to donate: proposals for "savior sibling" regulation in Latin America. Colombia medica (Cali, Colombia), 49(3), 228–235. https://doi.org/10.25100/cm.v49i2.3619

Beverly Sumanti

The healthcare ethics topic that I decided to explore is the use of robot companion pets for patients with dementia. I commonly work with elderly dementia patients in long term or subacute settings where there are 12-20 patients per caregiver. Many patients do not receive many visitors or family. I recently provided care for a patient named “John.” His mobility was impaired from Parkinson's and a recent hip fracture. He had moderate dementia. He also had depression and sometimes would become agitated and combative with staff. In the afternoon “John” would become restless and anxious. We attempted non pharmacological interventions to decrease these behaviors, none of which were effective. One day the activity assistant asked “John” if he would like to visit the robot companion cat. He agreed and was calm and interacting with the cat, and it initiated him socializing with other residents. He believed the cat to be real as well as the other residents. The staff were going along with the idea that the cat was real. This non pharmacological intervention was effective with relieving his anxiety. “Johns” wife arrived later that evening and was upset that her husband was given a “fake cat” and felt like staff was deceptive by leading him to believe that it was real. To the patient's wife her perception was that the staff was not maintaining “John's” dignity. 

The Four Topic Approach: Medical Indications: The patient's medical problem is chronic. The goal of treatment is to alleviate negative emotions and behaviors and improve his quality of life. Patient Preferences: The patient does not have the mental capacity to be able to give informed consent. The patient's wife is the surrogate to make decisions for the patient. Quality of Life: With the intervention of the use of a robot companion pet, the patient may benefit from a reduction in undesirable behaviors  such as restlessness, feelings of loneliness and agitation. This would in turn possibly improve the patients quality of life. This could assist by reducing the amount of psychotropic medications that the patient takes. Some may feel like the use of a robot companion for a patient with dementia would be deceptive and not maintain their dignity. Contextual Features: There could be conflict of interest with the use of robot companions for dementia patients if it would be used as a replacement for staff to provide care or companionship to the patients. The patient’s wife has an interest in participating in clinical decisions and is currently opposed to the idea of a robot companion. 

The utilitarian ethical perspective is with the intervention of the use of a robot companion the benefit could be that the patient will have a decrease in behaviors. This would improve their quality of life. If the intervention has successful outcomes in reducing the patient's behaviors, the consequence may be the risk of perception of loss of dignity. Some may believe that the benefits of improved quality of life outweigh the risk of the decreased perception of dignity. In the virtue ethical perspective of non-maleficence,  the deception of the healthcare staff allowing the dementia patient to believe that the robot is real and playing along could be viewed as not respecting the patient's autonomy.

Robel Anshebo

Ethical scenario

Agata Gawron is a Canadian engineering project coordinator seeking eligibility for Canada's Medical Assistance in Dying (MAID) program. She states that her struggle with rehabilitating from osteoporosis and stroke has caused her debilitating depression, anorexia, and PTSD. She considers her struggle with her physical health tolerable in comparison with the torment of chronic mental health issues. Currently, to qualify for the MAID program, an individual has to be diagnosed with a terminal illness. A mental health diagnosis isn't listed as a criterion for MAID, rendering Agata with no other option. Canadian healthcare department officials have backtracked on their plan to expand the MAID program to those suffering from chronic mental health issues as their health system wouldn't be able to tolerate this expansion.

Medical indications: 

Agata's medical problems include multiple chronic conditions like osteoporosis, PTSD, depression, and anorexia. Agata reports that she's been struggling with mental health issues for three decades. The goal for participating in the MAID program will be to end her suffering by committing physician-assisted suicide. As discussed, current Canadian medical law prohibits MAID as an option for patients without a terminal diagnosis.

Patient preference:

This individual is fully autonomous and has been deemed competent to decide the treatment plan. From the new article, we aren't told if Agata has participated in any forms of self-endangerment or psychosis that may indicate that she is incompetent to decide her treatment.

Quality if life: 

Agata describes that her quality of life is poor and that the mental battle of dealing with many chronic conditions along with clinical depression has reduced her experience of life. Considering that the only real amelioration methods for her medical conditions consist of stroke rehabilitation and preventing her osteoporosis from decompensating, the prospect of her mental health improving significantly even with the use of psychotropic meds is low. It seems like Agata's suffering has finally become intolerable.

Contextual features: 

The main barrier to Agata seeking MAID is the legal prohibition of the program to be applied for those without terminal illness. We can also assume that Agata has close relatives and loved ones that have polarized opinions on her choice to seek MAID. Also, I think it's worth noting that the implication of allowing those dealing with chronic mental health issues to be considered for MAID may be counterproductive to the pharmaceutical companies supplying medications to this population, thus there can be multiple parties affected by this legal decision downstream.

Buddhism: 

Buddhism explains that suffering is a naturally occurring phenomenon and that the vast majority of human suffering is caused by the attachment to impermanent things. In the case of Agata, the Buddhist view might question suicide as an appropriate solution to their suffering. Buddhism considers individuals impermanent and that the attachment to the self-idea and goal can be attributed to more suffering. There's no single medical solution for mental health issues, but the individual should avoid focusing on their suffering and comparing their current level of health to previous illness-free periods as this may also be contributing to their suffering.

Utilitarianism: 

Utilitarian systems are more concerned with reducing suffering while maximizing pleasure among the population. When discussing MAID as an optional treatment modality, the utilitarian may consider medically assisted suicide as productive to reduce suffering for the individual while also providing them with the peace of mind of knowing they won't have to carry this heavy burden any longer. I think many can contend with the utilitarian perspective on MAID and may foresee acts of medical abuse while adopting utilitarian policies to the MAID program.

MAID counter-argument: 

Many people find a point of contention with the values of the MAID program. They consider its practice a slippery slope, and expanding its practices to those without any terminal illnesses or medical diagnoses may lead to abuse of the system.

Referrences: Navarre, B. (2024, March 5). Canada backtracks on allowing euthanasia for the medically ill. US News. https://www.usnews.com/news/best-countries/articles/2024-03-05/canada-backtracks-on-euthanasia-for-the-mentally-ill

Sherwin Afable

Ethical scenario:

• I’m sure these situations happen often in the healthcare system but this is the most significant example that I’ve personally experienced. There is/was a patient at my hospital whose condition had seriously deteriorated over the eight months the patient had resided in the hospital. The patient suffered from lewy-body dementia that worsened over time up to the point where the patient was considered non-verbal. The patient had no family contacts and no prior DPOA assigned nor advanced directive which meant that the hospital was obligated to maintain all life-sustaining measures for this patient. While the patient’s dementia had presented itself primarily as agitation at the beginning of their stay, over the course of their hospitalization it worsened to the point of general unresponsiveness except to moan “No” in protest whenever we needed to provide care to the patient. 

Topics of Approach:

Medical Indication:

• • Given the patient’s inability to make decisions for themselves and without an appointed decision maker, the hospital had to pursue all life sustaining measures. Intubation, Pacemaker installation, central line placement, NG tubes, all of these were performed on the patient during their long stay as they were all medically indicated at a point. 

Patient preferences:

• • The only form of patient preference able to be communicated was “no” for a majority of the patient’s stay. While it was clear from an observational standpoint of the patient that they primarily wanted to be left alone, the patient was evaluated as being unable to make their own clinical decisions, placing them under the paternalism of the healthcare system and law. 

Quality of life:

• • The diminishing quality of life is what makes this case an ethical issue. Quality of life is already difficult to maintain for patients with dementia but for this individual it was also accompanied by serious deconditioning and health decline in the hospital. Although the interventions performed on the patient were medically indicated, the patient doesn’t have the capacity to care for themselves in a way that allows for these interventions to actually promote quality of life. 

Contextual features:

• • Advanced dementia disqualifies the patient from making their own health decisions and in the absence of a DPOA or advanced directive the state and hospital is obligated to keep the patient alive. This policy is likely intended to bridge the gap between when a patient without decision making capabilities nor DPOA enters a hospital and when they’re assigned guardianship. However this policy’s utility declines in long length of stay cases. 

Ethical Theories:

• Deontology: 

  • The responsibility and duty of the healthcare system is to most equitably provide care and distribute health and medical resources to the population. The laws requiring patients entering the healthcare system without decision making capability, POA, or advanced directives to remain full code and to pursue all life sustaining interventions reflects our moral and ethical societal beliefs that human life has inherent value and worth. In this situation, however, there is conflict for providers to balance beneficence and non-maleficence for a patient with poor quality of life but is under the protection of law to receive all necessary medical interventions. 

• Utilitarianism: 

  • When the ethics team of the hospital became involved in this patient's case, much of it was directed towards how the process of guardianship could be expedited to allow for DNR status for this patient. The utilitarian framework's goal is to minimize suffering while maximizing pleasure or happiness, neither of which seemed to be occurring in this patient's case. Switching this patient to DNR without the patient's ability to contribute to the discussion may conflict with the ideas of beneficence and non-maleficence on paper, but is ultimately the best utilitarian argument as these additional interventions were not increasing quality of life for the patient.

Counterpoint:

• Laws protecting these kinds of patients are necessary. Without them, patients unable to make their own decisions and without people to advocate for them can become forsaken by the healthcare system. Without any support, it would be easy for a provider to display a kind of patient neglect and determine that a patient should be DNR or be left to pass when it may not be appropriate for the context.