Today is Part 4 of our aging series, ethical decision-making with the aging population. Ethics is currently a hot topic in the field. According to Kumer and colleagues, ethics is defined as a moral philosophy or a set of moral principles that determine what is right, good, virtuous, true, and just, as defined by a culture or society (2011).
It is important to note that many cases in bioethics do not have one clear answer. There are many different components involved. Therefore, you have to look at all aspects of the case as a team and decide on the most ethical way to treat the patient.
Ethical Considerations in Aging
The University of Washington, Department of Bioethics has some great handouts on ethics and ethical considerations. They state that there are four topics by which every ethical problem should be judged. They are 1) medical indications, 2) patient preferences, 3) quality of life, and 4) contextual features, which can be social, economical, or legal.
Medical indications should be used as part of our decision-making rubric. We look at the medical facts. What is the patient's diagnosis? What comorbidities exist? With that diagnosis and the comorbidities, what is the prognosis for that patient if that disease process is normal? Obviously, no two patients are absolutely the same, and therefore a prognosis or prognoses are somewhat subjective. But you usually have some averages or some norms. What are the available interventions? What is the true purpose of the medical intervention and why are we doing it?
Another important consideration is patient preference. One of the first questions we should ask every single patient, if they are able to answer us, is, “What are your goals for this treatment, for this therapy or for this procedure? What do you want?”
We know that with any procedure or any treatment, there may be some risks. Even outside the realm of speech-language pathology, there may be risks to a treatment. But the patient has to decide if the risk is worth the benefit. For example, it is not uncommon for an elderly patient who has a fracture, and the physician says, "We're not going to do surgery because the risk of surgery outweighs the benefit of the surgical intervention." Therefore, it is important to talk to the patient and get their preferences and their assessment of whether or not they believe a procedure is worth the risk.
Ethical questions that should always be asked include:
- Is the patient competent to make a decision? Sometimes we may have patients who do not have the mental capacity, whether it is from some type of traumatic brain injury, stroke, a progressive illness such as dementia, or if the patient has some major, underlying cognitive impairments. We have to ask, is the patient competent to make this choice or this decision about their care?
- Does the patient truly understand the options? Patients should be presented with the options.
- Is the patient being coerced? We know families have a big impact on patients. Is the patient being coerced or pushed toward a decision that maybe they don't want to make?
- Who makes the decision if the patient can't?
Quality of Life
Quality of life can mean different things for different individuals. Some view quality of life as, “Hey, I’m alive. This is great.” While others may view their quality of life from their physical abilities to participate in some of their enjoyable activities and if they can't, then their quality of life is decreased. Therefore, it becomes important to ask if my perception of quality of life or the family’s perception is the same as the patient’s. What I feel is a breaking point for my quality of life may be completely different from my patient’s quality of life. The patient may not want any further intervention and that may be the complete opposite of what I would want or what the patient’s family wants.
Is there bias or prejudice in our decision-making? It may not be something we are consciously doing, but almost always you have some type of bias through your life experiences. It is important that you step back and take your personal opinion and bias out of the decision-making.
Patient care can be positively or negatively influenced by contextual features or constraints. Those may be financial, driven by payer type. They may be social or cultural. They may be emotional. They could potentially be legal or even scientific. There may be religious constraints with some specific belief sets.
Case Study – Mary
Here is our first case study. Mary is a 90 year-old female living in a long-term care setting. She has a diagnosis of end-stage Alzheimer’s Disease and has drastically decreased PO intake over the course of the past three months. Though her weight loss isn’t severe yet, it does appear to be on a steady downward trend. Mary’s family tries to visit daily and constantly pushes her to eat, even when she refuses. In a family meeting, Mary’s son expresses that he’s worried that his mom will starve and wants to have a feeding tube inserted to give her nutrition. Mary’s daughter isn’t so thrilled about this idea, worrying that her mom will not survive a procedure like this. Mary has a DNR (Do Not Resuscitate) order, but does not have a living will stating her wishes, nor does she have a designated medical power or attorney (POA). The son and daughter are both considered next-of-kin without a clear one-person power of attorney.
What type of ethical considerations or questions do we need to consider in this scenario: medical indications, patient preferences, quality of life or contextual features? Quality of life is the primary ethical consideration. Medical indications is a close second. Then patient preferences and then contextual features.
Medical Indications- Questions to Ask
In regards to medical indications, what questions should be asked or what issues should be considered with this patient? Some questions may include:
- What is the purpose of this tube? Is the purpose of this tube to appease the family? Is the purpose to maintain nutrition? Is the purpose because the patient will want one?
- Will the tube prolong life? The answer will be different depending on the disorder. There is a lot of research in the area of dementia showing that a PEG tube for patients with late dementia does not prolong life. It actually has a very slight decrease in life span. This is why we must stay current on evidence based practice. We need to provide patients and families with quality, current information about feeding tubes.
- Do the risks outweigh the benefits? The patient will be under anesthesia to place the PEG. Does the patient have behaviors that they may yank the tube out? Will it have an impact on the patient’s nutrition, hydration, etc.
Since Mary doesn’t have a living will, who makes that decision? If she does not have advanced directives, who makes that decision? In my experience, I have seen some pretty crazy family meetings because the patient doesn’t have a power of attorney or a designated person to make their medical decisions, and they aren’t capable of making their own decisions. Those are very interesting family meetings because everyone has an opinion, and if no one can agree then who is going to make that decision? It’s almost like a trial by jury. Some of those scenarios can be that serious.
It also need to be determined if Mary (the patient) is capable of giving any input even though she may not be competent to make extensive medical decisions. Can she answer very simple yes or no questions? Can she choose between two things? Does she understand what is going to be done to her? If she does understand, can she give you some basic input on what her preferences are? I’ve seen patients who can still give you preferences long after they are deemed incompetent to make medical decisions. In cases like Mary’s, where there are multiple family members and no one person who is the clear POA, it would be a very good idea to have Mary, along with her family, give her input even though she doesn’t have the final decision-making power.
Quality of Life
For this case study, we have to ask if the feeding tube will increase the quality of life or will it prolong life? Maybe, maybe not. Will placing a tube make staff less likely to encourage PO intake, including pleasure foods? I am a realist, and over a decade of long-term care and post-acute care experience, I have come in contact with many staff who, once the patient gets a feeding tube, they no longer encourage PO intake, even if the feeding tube is for nutrition or hydration. The patient may still be able to eat or drink without major aspiration risks, but maybe they are not eating enough, and that is why the tube was encouraged.
We know that active eating and feeding has such a social component. How will this affect Mary’s relationship with her children? If they are sitting around her room visiting and eating, and she’s not, how does that dynamic change? Will the patient still be able to have pleasure foods?
Again, the best exercise for a swallow is to swallow. If Mary is not encouraged to still have some PO intake, she will most likely become even more reliant on the feeding tube.
There are financial considerations. Is the facility pushing the PEG placement because they could get 100 days of skilled coverage under Medicare Part A? Unfortunately, throughout many years in this setting, I have seen this occur. When a patient has a PEG tube placed, they can be skilled under nursing care for their entire 100 days of Medicare Part A coverage. The PEG tube is only going to get them that 100 days, nothing beyond that. But 100 days is a lot of financial motivation for a facility that is going to have the patient anyway.
Remember, in Mary’s case, neither child has a power of attorney document. What is going to occur when they disagree? Will there be possible legal action? You don’t know. In this day and age of so many attorneys, and the numerous commercial about nursing home abuse and neglect, financial considerations are extremely important. Because we are making decisions for patients, there is the potential for some type of legal case, especially if one child disagrees with another child.
Principles of Bioethics and Application to Speech-Language Pathology
The first principle is nonmaleficence which means to do no harm. How can we harm patients? One way is to use our personal bias to actually encourage things that may not be of the best interest to our patients.
There is also a concept known as “principle of double effect” which is when one action can have more than one effect. One action may cause three others and two of those actions may be good, but one of them is bad. This is when the idea of the good outweighing the bad comes into play.
In ethical decision-making, you are trying to choose the lesser of the two evils. For example, there may be a procedure that is extremely painful for the patient, but it prolongs their life. Think of chemotherapy and radiation for individuals with cancer. Those are painful procedures but they may prolong their life. Open-heart surgery or bypass surgery are extremely painful, but they may prolong life.
Another example is the Do Not Resuscitate (DNR) order for patients with terminal conditions. This is when you have a patient who is very frail and you know that if the patient codes and they need CPR, that is going to crush their upper torso because they are so tiny. This is when you need to choose the lesser of two evils. If the patient has a DNR then we don’t need to worry about CPR on them. If a patient has a terminal condition, are we going to do CPR and prolong a life that may not have a good quality of life? These examples show that there are a lot of different questions to ask. There are no set answers because each case is unique.
Beneficence is “doing good”. What good are we doing for our patients? First and foremost, we are treating patients through evidence-based practice. We are using evidence-based techniques. We are using techniques that have been proven to work. We are not just going into the patient’s room, talking to them for a little while and then calling that therapy. We are not going into the patient’s room, talking with other staff, letting the patient sit there with no interaction and calling that therapy. That is not benefitting the patient.
Always remember the patient’s best interests. Sometimes, we have to be the voice for our patients. But we need to have their best interests at heart which may be contrary to what they want or what their family wants.
Beneficence also means removing the patient from harm. Seeing a patient being harmed by another patient, a staff member or a family member, it is not always easy to step in and take the person away from the perpetrator. That may not be an easy thing to do but we are required by our code of ethics to hold our patient’s wellbeing paramount.
There are also Good Samaritan laws which include situations like stopping on the side of the road to help someone in a car wreck. If there is no one else there and the patient dies, the Good Samaritan law protects you from being sued by the family because you were trying to do good. You were practicing beneficence.
Does the Good Samaritan law apply in a residential setting where advanced directives are clearly stated? If a patient, who clearly has a DNR, codes and we provide CPR, those Good Samaritan laws will not protect us because the patient has an advanced directive that states what will be done in each of these cases.
Respect for Autonomy
The patient has the right to choose. They have the right to choose whether they will undergo life-saving procedures, surgeries, CPR, defibrillation, even IV or NG nutrition. Some of these procedures are life-saving or life-sustaining, and the patient has the right to choose whether or not they want them. We have to respect the patient’s choice, even if we don’t necessarily agree with it.
For example, a patient who has end-stage dementia tells their family, “I want you to do everything you can to keep me here as long as possible.” The patient has stopped eating and the family says they want a PEG tube put in because they think the patient is starving. You know that is not necessarily going to be a life-saving or life-sustaining procedure, however, the patient and the family have the right to choose that. You can educate the family and present the options, but in the end, they have the right to choose.