Models of Ethics Deliberation and Consultation

Abstract

In this chapter, we describe the origins of institutional healthcare ethics consultation services and the development of healthcare ethics committees in the US, Switzerland and elsewhere. We discuss some of the landmark situations, cases and macro-political and social frameworks that have contributed to their genesis. Next, we describe common models of ethical decision-making. While this list is not meant to be exhaustive, it covers approaches to ethical decision-making that are commonly used in clinical ethics, and which also can be found in the nursing ethics literature. We examine the roles that healthcare ethics committees fill in some hospitals in the US, including collaborative and consultative functions for clinical ethics issues and organizational ethics questions. We all note that in other countries ethics deliberations are not necessarily carried out only this way, for example in Switzerland. Also noted is the role that nurses with advanced education and ethical expertise can play in supporting and empowering point of care nurses and other clinicians to address moral distress as discussed in other chapters. Finally, we describe preventive ethics, and the critical role of nurses in the early recognition of emerging problems and calling attention to them before they escalate to intractable conflict.

Appendix A: Example Discussing Advance Care Planning With a Patient

What follows is a hypothetical example of the nurse’s role in discussing advance care planning with a patient.

Amina Jordan is a Registered Nurse at a community primary healthcare center in a small Massachusetts town. Prior to her marriage she had worked as a critical care nurse in a busy academic medical center in the North East United States. She was familiar with the problems and conflicts that could arise when patients lost their decision-making capacity (either permanently or temporarily) and it was not known what their values and preferences were related to life sustaining treatments (LST).

Among her practice responsibilities now is educating the practice population about the importance of advance directives for preserving patient’s autonomy even after ability to express values and preferences is lost. To facilitate this Amina completed a continuing education course focused on advance care planning that provided her with the basic knowledge and skills for having such conversations. She also persuaded the practice to allow her to provide classes on the topic for members of the community. This brief presentation demonstrates how Amina introduces the topic to a healthy recently retired patient who just moved into the community. She is married and her husband is also healthy. They have no family in the immediate area. At Clara Darnbrough’s first visit as part of the data-gathering by the Nurse Practitioner she is asked whether she has completed an advanced directive or has appointed a surrogate decision-maker in the event of her inability to express her wishes. She says she has not and always thought her husband would know what to do but was open to discussing this further. An appointment is made for her to talk with Amina. The following is a re-enactment of the discussion.

Amina:

(who has prepared the room so that she is sitting facing Clara with some space but no barriers between them): Welcome Ms. Darnbrough. I’m Amina Jordan, a Registered Nurse here at the practice. My only purpose today is to learn what you know about advance directives and help you to think through what your wishes might be for future healthcare interventions if you became unable to tell people yourself. The staff at this clinic asks every new patient over the age of 18 years whether they have an advance directive and we revisit this every year to see if anything has changed. We believe that having an advance directive is the best way for our patients to exercise their autonomy even when they have lost the ability to express what they want in the way of medical interventions. I am wondering how you would like me to address you today (Clara or Miss, Mrs, Ms. Darnbrough?).

Clara:

Clara is fine.

Amina:

OK Clara it is, Perhaps a good place to start is to ask you what you know about advance care planning?

Clara:

Well I am not sure … I have heard about living wills? I have heard that people who are very sick should probably think about what they want in terms of the doctors ‘doing everything’ to keep the person alive or not. But since I have always been healthy, I thought I would just deal with that at the time. I suppose no-one likes to think about such possibilities especially as one gets older. My hope has always been that death would be fast and I would not be aware of it happening (laughs … I suppose that could also be called me avoiding thinking about it).

Amina:

Yes that is understandable and you are certainly not alone in thinking that. However, as a nurse who used to work in critical care settings, I have seen many situations where people become sick so quickly they do not have time to tell people what they do and don’t want. Then their loved ones are faced with trying to figure it out at a time when they themselves are stressed and may not have a good understanding of the medical situation or options. So in a way you are both trying to make sure that you do not receive the type of treatment that you would not want, and that you do receive the type of treatment you would want. So having thought about this beforehand, you can empower the person who is having to make decisions for you and reassure them that they are choosing what you would want.

There are four main areas of advance care planning – you need not remember them … we can revisit this after you have had time to think about what you want and discuss it with others. I will also give you some information to take home:

• Deciding who you want to make decisions for you if you become unable – this may or may not be your spouse or partner (it may be too big a burden for them to take on), it may be someone you trust to carry out your wishes.

• Thinking about what courses of action (treatments/interventions) you would find acceptable and under which conditions

• Talking things over with others such as your loved ones, your physician/nurse practitioner, a knowledgeable nurse who can walk you through different scenarios

• Documenting what you would want (most like a living will)

It is important to know that whatever you decide, even if written and witnessed, can be changed by you any time you want to make revisions perhaps as your situation changes—advance directives—your written or spoken wishes, are not permanent.

Clara:

That is good to know. I would hate to think I had committed myself to something I think I want now and that I might not want later.

Amina:

Yes it can be very tricky to sort through everything that could possibly happen and what that would mean and envision what you want. We can talk again after you have had time to discuss with your husband and other family members or friends. You can also bring him or her to our next meeting if you think that would be helpful. Think about what kinds of activities are most important to you, and use those to guide your decision-making. For example perhaps time spent interacting with family is something that brings you joy, and if you were ever in a state where this was not possible, this would not be an acceptable quality of life for you.

There is an easier way of thinking about what you would want that has been prepared by the Aging with Dignity organization. It is in the form of five questions to consider and is called the Five Wishes. Instead of trying to describe what you would want in a range of possible situations the organization has come up with questions to ask oneself. They developed this as a result of their founder’s experiences working in Mother Teresa’s homes for the dying. They wanted to “ensure that every person who was facing problems at the end of life, or with changed circumstances, is given the opportunity to talk about what matters most, and to ensure that their wishes are known:” (https://fivewishes.org/) I will give you some more information on this to take home with you and we can talk a little more about them now and after you have had time to consider what you want.

The first wish is about deciding who you would like to make decisions for you if you lost ability. We talked a little about this earlier. Perhaps think about whether your husband would be the best person or someone else. You could also think of a second person who can support your husband. It is best to have someone who knows you well and is able to put their own worries and needs to the side so they can determine what you would most likely want.

The second wish has to do with what kind of medical treatment you would or would not want. It is often helpful to think about how long you would be okay with certain treatments as well. For example, some people would consider it alright to be on a ventilator to help their breathing for a short time (say, a few weeks) especially if they thought this would allow them to recover enough to do the things they normally like to do. However, they might not want to be on a ventilator for months or years. If you recover your ability to make your wishes known, at any point you can change your mind about what you find acceptable and you have a right to stop the treatment or intervention. The person you appoint to make your decisions only does so for the amount of time that you cannot communicate what you want and your reasons for wanting it.

Third, you can think about how comfortable you would want to be, and in what setting you would be most comfortable. Is being at home very important? Would you be OK with some discomfort if it would allow you to be at an important life event for a loved one (a marriage say, or the birth of a grandchild)? For example, some medications used to treat cancer can weaken you and cause side effects but might extend your life. Or would you prefer to have your pain treated with medications, such as morphine, that provide comfort but do not extend life? Would you be okay being cared for in a facility, if necessary?

This relates to the fourth wish, which has to do with how you want people to treat you. What matters most to you in your care? What would you want your providers to know about you, your values and preferences.

Finally, the fifth wish is about what you want your loved ones to know. What do you want to make sure they are aware of, in the event that you are no longer able to tell them?

Clara:

Well, this has certainly given me a lot to think about. I like the idea of talking about the Five Wishes with my family.

Amina:

That is a great place to start. Here’s some information to help you and some internet resources that you can use. Call the office when you are ready to talk more and think about whether you would like me to help you discuss this with your family. It is something that the people in your life should also be thinking about if they haven’t already.