How Does Decision-Making Capacity, Patient-Centered Care Inform Oncology Decisions?

When a patient may not have the capability of understanding or consenting to treatment options, Louis P. Voigt, MD, and Yesne Alici, MD, will utilize decision-making capacity techniques.

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Daniel C. McFarland, DO, was joined by colleagues Louis P. Voigt, MD, and Yesne Alici, MD, discussing decision-making capacity during a recent Oncology-on-the-Go episode in collaboration with the American Psycho-Oncology Society.

What exactly is decision-making, and how does it come into play in oncology? Both Voigt and Alici break down the concept, and how they are brought into the cancer care continuum. This could include being asked to confer on a patient that the treating clinician does not feel like they are grasping the conversation at hand, and they want to confirm if the patient has the possibility of decision-making capacity.

The conversation also touched on how medicine has evolved between centuries, and needing this patient-centered care is more important than ever since clinicians do not have those community ties or connections with patients like they used to.

McFarland is the director of the Psycho-Oncology Program at Wilmot Cancer Center and a medical oncologist who specializes in head, neck, and lung cancer, in addition to being the psycho-oncology editorial advisory board member for the journal ONCOLOGY. Voigt is an intensivist and chair of the Ethics Committee at Memorial Sloan Kettering Cancer Center (MSKCC). Alici is vice chair of Clinical Operations in the Department of Psychiatry and Behavioral Sciences, clinical director, associate attending psychiatrist, and medical director of the Biobehavioral Health Clinic at MSKCC.

McFarland: If we were to go back in time, let’s say we were working in a 19th century hospital and someone said, “I’d like to get a decision capacity referral.” How might that person look at me? Would that even make any sense?

Voigt: If you go back to 19th century medicine, we didn’t have a lot of specializations, so physicians were not differentiating themselves into specialist and sub-specialist. The way that care was delivered was in the way of an intimate relationship between a physician and a patient. In some instances, a physician and a patient plus the patient’s family. More importantly, there were a lot of other contextual data that those physicians in 19th century were familiar with. They weren’t living far away from their patients. They were living in the same communities. They knew whether these patients went to church, temple or practice any form of religion. They were familiar with the patient’s belief system and customs and traditions, and because It was so community centered, they somehow knew about those patients ability to understand and in my view, based on books and other anecdotes from past times, they had it relatively easy in comparison to us nowadays and the way that modern medicine is practiced, but also the mega urbanization that has happened in the 20th century.

All of us have cared for patients who travel from far from where they grow up, where they live, sometimes from foreign countries. Yet, we are being asked to care for these patients, in the context of ethics or psychiatry, we have to be able to try to size or capture an entire dimension of a human life in the 30- or 60-minute encounter. That is what we modern clinicians, modern physicians are confronting when we are being asked to think about what I consider to be one of the most important aspects that speak about the integrity of a human being, your ability to think, to make major decisions. The 19th century physician would be able to say, “I met Mr. Johnson yesterday. I saw him when we were celebrating a common tradition. There was a party. He was jovial, and then today he’s sick, and he’s being admitted to the hospital, and he’s not making sense, this is not who he is.” [The physician] would be able to make that determination in a way that may not follow very strict criteria, but he would be able, or she would be able, to do so in a way that would, in fact, perhaps be, dare I say, more accurate than what we are doing today.

McFarland: What I hear you saying is that this 19th century physician would almost have no problem with substituted judgment and saying, “I can speak for this person, because we share the same cultural background.” You’ve probably known the person, etc. In today’s day and age, with modern care and multicultural [backgrounds] patients come from all over, and they may or may not be similar in our backgrounds. The concept of it in and of itself, of decisional capacity, without say, the nuances of informed consent and all these other things just weren’t even thought about at that point. Let’s skip ahead to the 21st century, and I’m going to ask [Alici] to walk us through. Can you explain what decision-making capacity is and how we provide that determination?

Alici: When [Voigt] was answering your previous question, I was thinking we can have a positive view of the 19th century physicians and how they knew their communities, but a question comes to my mind, whether they were as attentive to patient autonomy as we are now this day and age. Maybe they assumed the values of the people in their community and made paternalistic decisions. All that is to say, I’m glad we're in 21st century, and glad we’re making decision-making capacity assessments. What is it? The decision-making capacity, the simplest way to put it, is a person’s ability to make a decision for the decision at hand, for lack of a better word, in that point in time, while appreciating the potentially foreseeable consequences of that decision. I’ll open it up a bit more.

I’m a psychiatrist working in a cancer hospital, [many] times when we called to see patients for capacity assessments, it’s for a number of different reasons, but most commonly the clinician is unsure if the patient has capacity or not, because the patient refuses an intervention or some medical procedure. There are also times that it’s an urgent situation, a decision needs to be made, and they’re unsure. When I get the Capacity Assessment, I’d ask the referring team, “What decision are we referring to?” Meaning decisional capacity assessments have to be decision specific. The law has allowed the clinicians to make these decisions, to make these assessments, but only based on specific decisions. As a clinician, I cannot make a global capacity assessment, and sometimes clinicians misunderstand that.

When I get an outpatient consult for a patient who's about to start cancer treatments, and if the clinician is asking me to make a capacity assessment, I’d ask the clinician, “What’s the treatment you’re going to be proposing to the patient?” The clinician may say, “We haven’t talked about the treatment yet, but I want you to assess the capacity first before we can start treatment.” That’s a big stop sign, because the patient hasn’t even heard the information, they should be deciding for. That brings us to the first of the decision-making capacity, the patient’s ability to understand the information that is presented to them. The information must have been given to the patient, so that we can assess their understanding.

In the inpatient setting, when I’m asked to do a capacity assessment, I typically want the primary team there in the room with me, because if the patient has any questions about the procedure at hand, I want them to explain it to the patient, and then I can assess the understanding right there. There are times where you go into the patient’s room, the patient may not have absorbed the information in the first place when they spoke with the team, so they’re at a loss, but not because of any lack of understanding. There wasn’t enough time to hear that information, to consume that information, they need to hear it again.

The other thing I would assess for would be the patient’s ability to appreciate the risks and benefits. That’s based on what the patients are told. It’s heavily based on what the law would say, being able to understand or appreciate as much as a reasonable person. I don’t expect the patients to tell me in detail all their genetic mutations and how that may explain their treatment response to certain immunotherapy, but to have a basic understanding and appreciation of the risks and benefits of the treatment. Then I move on to how the patient is coming to a decision.

The rationalization part of it, and that’s one of the things sometimes we look for in patients with cognitive changes or serious mental illness, is whether their cognitive difficulties or delusional thinking are interfering with their ability to rationalize their decision. In other words, if a patient is refusing their heart surgery because they’re delusional that if anyone were to touch their heart during the surgery, their lives will be taken away, or they’ll have some kind of spiritual experience of sorts, they’re not rationalizing. The final part of it is communicating a choice. That’s interesting, because sometimes we would go in and talk to the patient, and we would think that patient has capacity. They would communicate a choice, saying yes, and then 2 minutes later, someone goes in, and they’re indecisive. They’re saying no. It’s communicating a consistent choice which is the highlight.

McFarland: That’s the Applebaum and Grisso from 1988 the 4 skills model. You have this dichotomous [decision]. It’s either yes or no.1

Alici: It’s either [the] patient is able to demonstrate decisional making capacity or not. I emphasize the word that I’ve used here being able to demonstrate decision making capacity, as opposed to say the patient is incapacitated or capacitated. I’m basing my opinion on brief interaction with a patient. It’s possible that in that moment, they’re not able to demonstrate their decision-making capacity. That’s an important linguistic piece of it, and then I would communicate that to the team. There’s also a legal mandate, at least in the New York State, that the patient should be informed of the results of the capacity assessment. If the clinician deems that that will be harmful to the patient, then their next of kin, or if they have a health care agent, they should be informed that the patient is not able to demonstrate decision-making capacity, and therefore we will proceed with XYZ. I want to highlight, right after the capacity assessment, the documentation piece.

It's important to realize that the clinicians who are requesting the decision-making capacity assessment should write their own assessment of the patient’s capacity as well. As the second physician or the second clinician I’m providing a concurring opinion on patient’s capacity. It’s important to include that in the in the primary team’s documentation, in my documentation, I’m including these 4 pillars of decision-making capacity from Applebaum and Grisso, including the decision at hand, the point in time, what I think may be potential causes of the patient’s inability, and whether it’s a reversible situation. I’m also writing something about some kind of guidance, and that may be the ethical part of a site where I’m writing if the patient is incapacitated, then what are the next steps. We go to next step. Is there a health care proxy?

The other thing I should mention, is it’s important to highlight what is competence? What’s capacity? We used to think that competence was only legally determined, and capacity is what we make as decisions at the bedside. A more recent Applebaum article, maybe from 5 years ago, highlighted that the terminology you use doesn’t matter what we make at the bedside. Whether you call it capacity competence assessment, it says decision based, it’s time specific. What’s typically called competence is what the judge would make in the court. On the other hand, that’s a global assessment. There are differences between those 2 things, but not just the 2 terms that could be used interchangeably and have been used interchangeably in the last few years.

McFarland: That makes sense, and it also speaks to some of the clinical reasons for even bringing up this question [regarding patients] with neurodevelopmental issues and things like that on the competent side. The other part that I’ve also read about is that our model for providing decisional capacity leans heavily on the cognitive aspects of the decision, and less so on the affective, or emotional part. That is to say that, in a sense, when the patient’s upset and whether this decision is something they would normally make under other circumstances, that’s something that we don’t have as much to go on, essentially. It also speaks to this broader issue of other ethical issues and other ways of making judgments. I’ll ask Louis about if he wouldn’t mind explaining for us how he sees that decision-making capacity is related to ethics and why is it important? Although I think we’ve hit that a bit, but give us your spiel. Why do you think it's important?

Voigt: Decision-making capacity is extremely important in medicine for the simple reason that, as we have evolved as human beings on this planet, we came to understand that individuals any human being, whether that human being has full ability, partial disability or severe disability, that human being is a human being with what I consider to be absolute rights. The way that I look at decision making capacity in medicine is through the lens of rights. It’s a right-based approach to it. There are many ways you can look at it, but for me as an ethicist, that’s the way that I look at it. I am entitled to those rights. They are not relative rights, and they are not given to me because people feel like it so the body, the integrity of who I am, my body, my mind, who I am, rest fundamentally on those rights and when I go to a hospital as a human being to receive care I anticipate, and it is built in that relationship that the hospital, the health care organization, the physicians and nurses and all other groups of people, members of the health care team caring for me needs to respect me as a person. Therefore, and you started, Daniel by talking about patient-centered care. I call it person-centered care because many times we have those relationships granted that when I go to a hospital, whether it is for a healthy follow up, a healthy checkup. We call them patients, but at the end of the day, they are persons. That’s the way that I view it.

In that setting, it is fundamental that all of us who are practicing at any level, as a member of the health care team, understand that we owe each one of these persons or these patients, respect, and how do we manifest that respect by being professionals, by honoring certain moral obligations, and those moral obligations that Beauchamp and Childress and impart to all of us with their famous books, the 4 Principles of Bioethics, which rely on, primarily us creating bridges and partnership to patients, to earn their trust, to explain to them that we are on their sides, that we are here to be of service to them, and that we treat each one of them as unique individuals, not as a number. We call them by their name, and we show them from harm, and we treat them fairly based on their needs. There is a concept of precision medicine, when you look at it from an ethics lens, precision medicine require that I treat each patient based on their needs. There are patients I may spend 5 minutes explaining a procedure because that patient is a physician like me, maybe a critical care medicine or a pulmonary specialist, but there is another patient who may require 30 minutes of explanation. That’s why decision-making capacity is so fundamental and so important that when we explain to patients that we are on their side. Here is our expertise and our recommendation. We give them options, we give them time to absorb that information, and then we give them an alternative and we give them the freedom to choose, which is a fundamental right as well, self-determination. Often, 99% of the time, this happened routinely in physician’s office or in the hospital, and these patients understand that, and they make these decisions.

Then there are times when things do not go well, and that’s when you start slowing down the process, calibrating, postponing, particularly if it is not an urgent procedure, because people tend to take time to understand has that patient had had a bad experience from a hospital or a physician encounter before, and then you customize and try again to regain that trust and do all of that with the sole purpose. I cannot emphasize that enough of being of service to patients I have seen physicians explaining something to a patient, and at the end, when the physician said, “Can you summarize for me what you heard?” which is a wonderful way of gaging what the patient [understood or did not]. The best physician that I model after what they do, they said, “It’s not you. Perhaps I didn’t explain it well. Let me get a stab at it again.” That’s humility, and that humility is fundamental to preserving the integrity and the honesty in that relationship with our patients.

McFarland: The humility is just a key piece in this whole, in this whole puzzle. Being patient-centered and being honest are things that drive us to do what we do. I often look at it as a part of the medical list, so I don’t expect to give the same chemotherapy to someone who’s got chronic renal failure or something like that. It’s the same idea. This is part of the patient with whom you're interacting with, and decisional capacity can certainly guide you in that regard.

Listen to the full discussion on our Oncology-on-the-Go podcast: https://www.cancernetwork.com/podcasts/daniel-mcfarland-do

References

1. Appelbaum PS, Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med. 1988;319(25):1635-1638. doi:10.1056/NEJM198812223192504
2. Beauchamp TL, Childress JF. Principles of biomedical ethics; 1st Edition. Oxford University Press. 1977.