The Powerhouse Patient Asks: Do I Need An Ethics Consultation? By Julie Buyon

By agebuzz Contributing Editor Julie Buyon

Did I do something wrong?  (No). Is my doctor behaving unethically? (Probably not). Is my treatment plan immoral? (Unlikely). Then why bring up ethics?

Health care ethics (also known as bioethics or medical ethics) can help us make health care decisions that are based on values, principles, and an understanding of both our rights and our obligations to others. Occasionally, some of these values, principles, and rights may come into conflict, such as:

-I don’t want my husband to know how sick he is because he will become so depressed that he will give up fighting his illness. Can I stop the doctor from telling my husband?

-Can I refuse treatment if accepting it is against my beliefs?

-My doctor and my family disagree about my treatment. I feel caught in the middle. 

-I feel like the doctor is pushing me to make a treatment decision I’m uncomfortable with.  

-Are we doing the right thing for Mom? What decision would Mom make if she didn’t have dementia?

We all want to make the “right” decisions about medical care – both for ourselves and our loved ones when we need to make decisions for them. But most of us aren’t medical experts, and medical treatment decisions can be challenging, scary, and complex – especially with multiple options and technological advances facing both patients and doctors. Today’s complicated medical care may raise questions about your values, goals, and ability to determine the right path forward for you, or a loved one. You might disagree with or not be fully on board with the treatment your doctor recommends.  

In most hospitals, nursing homes, and hospices, help is available to try to resolve these conflicts by requesting an ethics consultation.

Who Provides an Ethics Consultation?

Ethics consultations are usually offered by either an ethics consultant or an ethics committee.  An ethics consultant is usually a physician, lawyer, bioethicist, or another person with specialized ethics training. They may work independently of the organization or assist the organization as part of an ethics committee. Many larger organizations have ethics committees composed of individuals from various disciplines (including doctors, nurses, social workers, chaplains, lawyers, patient representatives, and community members) who each contribute different perspectives, skills, education, and experiences. In addition to helping resolve ethical conflicts, these committees may also provide ethics education to the staff and help devise policies for the organization. Institutions differ regarding how many committee members participate in an ethics consultation, but whether you meet with an individual or a small subset of the ethics committee, you should expect support, understanding, and compassionate assistance as you, your family, and the medical team work through difficult medical choices. Unfortunately, not every organization is able to offer an ethics consultation, but if you have a choice of where you receive your care it’s worth asking about. 

How Can an Ethics Consultation Help?

Bioethics is grounded in 4 basic principles:

-Autonomy: Respect for the patient’s values and right to make his or her own decisions

-Beneficence: Acting for the benefit of the patient

-Non-maleficence: To do no harm

-Justice: Treating people fairly and equally

Using these principles as a foundation, an ethics consultation can help:

-Clarify the issues in conflict.

-Describe the key principles and/or values that come into play for this specific medical decision.

-Help everyone feel heard and understood so that the conflict can be resolved.

-Facilitate discussions when there are differences of opinion between doctors and patients (and/or their family members) about the appropriateness of a treatment.

-Resolve disagreements over whether starting, continuing, or ending treatment (such as a feeding tube) is the right thing to do.

-Determine who should make treatment decisions for a patient who is unable to make treatment decisions for himself/herself. (However, remember that through advance care planning, a patient can designate in advance someone to make decisions for her if she becomes unable to make them herself.)

What Happens in an Ethics Consultation?

The ethics consultant or ethics committee team will listen to the concerns and determine if an ethics consultation is appropriate for the situation. Then relevant information will be gathered and reviewed. Both the medical team involved in the case as well as the patient and/or patient’s family will be spoken with to understand the different perspectives, goals, and needs.  Usually, the ethics consultant or ethics committee team will facilitate a meeting between the patient, family (if appropriate), and the medical team, so that everyone can better understand all the perspectives and work together to resolve the conflict in a way that respects both the patient’s values and the 4 foundational bioethical principles. After thoughtful discussion and consideration, recommendations for next steps to resolve the conflict will be offered.).

Give Me an Example of How This Works.

Let’s look at a situation that often arises: “I don’t want my husband to know how sick he is because he will become so depressed he will give up fighting this illness. Can I stop the doctor from telling my husband?”

In this situation, the wife’s desire to protect her husband from frightening news conflicts with the doctor’s professional obligation to tell the truth- and the husband’s right to make decisions in accord with his own values.  None of these values are “wrong” and all are grounded in what each believes to be in the patient’s best interest. An ethics consultant might clarify the conflict in that way, enabling a better understanding of the differing perspectives. An ethics consultation could help identify some potential harms for the patient if he does not know the truth about his condition and facilitate discussion about the importance of honoring a patient’s right to make his own decisions about care. Reviewing the concerns of the patient, the family, and the health care team in this way can open a new path for discussion and resolve the conflict in a way that everyone feels best serves the patient.

Do the Recommendations of the Ethics Consultation Have to Be Followed?

The ethics committee (or ethics consultant) does not make mandatory decisions or tell patients, families, or physicians what the “right” thing to do is; they make recommendations and suggestions based upon widely accepted bioethical principles.  

An ethics consultation is also an important process that shifts the power dynamic that is inherent in the hospital setting – everyone involved, regardless of their title or education or other markers of status – are recognized as equal partners who all want to achieve the best outcome for the patient.   

Is an Ethics Consultation Only Available in a Hospital?

Some larger medical centers offer them at their outpatient facilities as well. You may also be able to request a consultation in a nursing home, and many hospice organizations also can offer one.  

How do I Request an Ethics Consultation?

In a hospital, look on the hospital website for information about their process for requesting a consultation, or ask the patient relations department to assist you.  In a nursing home, speak with the social worker or Director of Nursing.  In hospice, ask the nurse or social worker to help arrange for one.

Knowing about the availability of an ethics consultation is yet another tool in the Powerhouse Patient’s toolbox. A wise teacher of mine explained that in health care ethics there isn’t always a right answer, but there is always a wrong answer. An ethics consultation can help you and your family identify some wrong answers, as well as help find common ground and a resolution that you, your loved ones, and the healthcare team can agree upon.  

“I think health care is more about love than about most other things. If there isn’t at the core of this two human beings who have agreed to be in a relationship where one is trying to help relieve the suffering of another, which is love, you can’t get to the right answer here.” 

-Donald Berwick, former Administrator of the Centers for Medicare and Medicaid Services

Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].