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January 11, 2013 | Posted By Wayne Shelton, PhD

As someone who has done clinical ethics consultations for many years I long ago reached the conclusion that many of the so-called ethical problems that we encounter during ethics consultations could be prevented if only a more constructive line of communication had been established from the beginning of the patient’s hospital stay. Let me specify just what kind of patients and families I have in mind, the kind of communication I am talking about and the type of intervention that is needed.

Let’s face it, most patients come to the hospital with an identifiable medical problem about which there is little controversy, so the physician can diagnose and treat with a predictable, usually favorable, outcome. These are not the cases for which we get called on to do ethics consultations, nor are they the cases that take excessive amounts of time and create significant emotional stress such as cases that involve conflicts. In the less common cases where serious conflicts between various parties emerge, we are usually dealing with patients who have more medical problems, which often involve the risk of dying. The patient often lacks capacity and is unable to speak his or her mind about the goals of care and how far to use aggressive medical interventions. This means that families or loved ones of the patient must speak for the patient, i.e. serve as surrogates, and communicate with physicians about care plan goals and the appropriateness of particular procedures such as CPR in the event of cardio-pulmonary arrest.  To say the least, this is a stressful role for families and loved ones.

On the one hand, families and loved ones who serve as surrogates are emotionally stressed over the condition of the patient and sometimes must face the grim reality that he or she might or will die. Thus, surrogates are not only stressed but are also grieving and trying to deal with their own emotions, which are often tied up in a complex network of family relationships. These emotions may be connected to strong feelings of guilt and regret about past events and issues; there could be a considerable amount of unfinished business between the surrogate and the patient, on which the family surrogate is focused. It’s fair to say that people in these states are prone to confusion, depression and even anger, all elements that contribute to communication breakdowns and failures.

On the other hand, families and loved ones qua surrogates have the distinct responsibility of speaking to the physicians in the voice of the patient about the kinds of treatment goals and outcome the patient would prefer, as opposed to what the surrogate would prefer. This means that surrogates must be able to process complex medical information—understand and use it as the basis for consenting to or refusing many medical interventions from the perspective of the patient’s preferences and values. This would be a challenging task for anyone under any circumstances. But factor in that during this stressful time they are expected to be able to differentiate their own interests, such as their strong unconscious feelings of guilt, from the best interests of the patient. They must be able to see that the patient may have wanted a medical outcome that they are not emotionally ready to authorize. Not surprisingly, these strong emotional tensions make grappling with medical realities, such as a dire prognosis, more difficult.

A disagreement between a surrogate and the medical team after it has fully developed into a major conflict is the typical point of entry for the ethics consultation intervention. I have long believed that more needs to be done in the way of preventing these disagreements from festering into conflicts, in terms of fostering better communication from the outset. First of all we can identify the high-risk patients, i.e. the patients who are at risk for medical complications and extended length of stay, in which conflicts are more likely. From the moment of admission, we need to start communicating with and meeting the needs of the families of these patients. This requires someone to take ownership of having a primary relationship with the family and, in particular, the individual who will be the family surrogate. One individual caregiver needs to expressly say to the family on the day of admission, “I will be the person you should contact if you have questions about the medical condition of your loved one, or if you have needs that we can help you meet.” Just as the ethics consultation strives to create a consensus after an ethical crisis has emerged, the caregiver in charge from the outset should help initiate and maintain a consensus throughout the patient’s hospital stay. 

From my own research I believe this role is important enough to justify a full time employee, usually an experienced nurse whom we might call the Family Support Coordinator (FSC) with special training in communication. The FSC would serve as the communication “traffic cop” directing the flow of communication between the team members, primarily between the family and the physicians and the social worker. If the family has questions about the medical condition or the meaning of a test result, etc, the FCS could help get an answer from the physicians, sometimes within an arranged family meeting. This type of intervention would unify the flow of communication and preclude the confusions resulting from an army of physicians and medical specialists, who come and go, having random encounters with the family.

The alternative I am recommending means an alteration in how patients and families have relationships with the hospital care team. It means that physicians are not simultaneously providing technical care to numerous patients, teaching new doctors, while also trying to take the lead in communicating with the most challenging families. Of course physicians should continue their leadership role in managing the medical needs of the patient. But I think it is time we realized the situations we face in today’s hospitals require someone with specific skills in communication and team functioning. We can no longer think of this area of patient care as one more responsibility of the physician or nurse, who are already overworked. Communication and better family support in hospitals requires its own specialization if we are to improve family satisfaction with hospital care and prevent many of the ethical conflicts, which so often also involve protracted hospital stays and the overuse of expensive resources. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

 

 

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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