In this study, we found that the professional value of nonabandonment at the end of life actually consists of two different elements: (1) providing continuity, of both expertise and the patient-clinician relationship; and (2) facilitating closure of an important therapeutic relationship. At first glance, continuity and closure may seem mutually exclusive, but these elements reflect different needs occurring at different times in the dying process. Early on, patients and family members fear that their physician, whose expertise and caring they have come to depend on, will become unavailable. Physicians are aware of this fear, and attempt to address it with reassurance or continuity strategies. Yet, as death approaches, some patients and families may feel abandoned nonetheless because they lose the continuity of their physician’s expertise or their relationship with that physician. Near death or afterwards, they may also experience a lack of closure of that relationship. Most of these physicians are not consciously aware of having abandoned their patients. Instead, they report lack of closure, or a feeling of unfinished business.
This study builds on prior work on nonabandonment and ties together other existing work on physician practices at the end of life. Using a bioethical framework, Quill and Cassel defined nonabandonment as “open-ended, long-term, caring commitment to joint problem-solving”.6
Certainly that definition, echoed in the Institute of Medicine’s call for ‘continuous healing relationships’,20
echoes the continuity that our participants discussed. Our study provides empirical verification of continuity in two dimensions: the perceived need for access to physician expertise, as well as the importance of continuity in a therapeutic relationship. In addition, our study adds another dimension to non-abandonment: the need for closure of the patient-family-clinician relationship near or after the patient’s death. This finding ties non-abandonment to a small literature that describes expert practices for physicians experiencing the loss of an important relationship with a patient. These practices include personal reflection,21
writing a condolence letter,23
and attending a funeral.24
Our study suggests that these practices could contribute to nonabandonment.
Little other empirical study of nonabandonment exists. A prior study of expressions of abandonment during ICU family conferences found that families expressed concerns about abandonment of the patient in several different ways including ensuring the patient’s suffering is eased, ensuring the patient’s end-of-life preferences are respected, and “letting go.”25
To our knowledge, our study is the only empirical study that provides a prospective view of abandonment and non-abandonment using longitudinal interviews that began at the time the patient had advanced disease, and followed patients and families through death and into the beginning of bereavement.
The significance of our study is that it provides empirical grounding for a central professional value. We note that Quill and Cassel favored the use of the term ‘nonabandonment’ because alternatives did not ‘capture the responsibility for continuity and joint problem solving in the face of uncertainty’.6
As a bioethical framework, we respect their reasoning. Our empirical findings enrich and extend these concepts in ways that we did not expect. Specifically our findings identify aspects of nonabandonment —continuity and closure — that can be acted upon.() Reducing system barriers to continuity, for example with non-hospice palliative care services, may foster nonabandonment. Physician or interdisciplinary team communication involving nurses and other clinicians that facilitates continuity and closure may improve patient and family experience. Finally, physicians can develop reflective skills that enable them to deal with loss and grief.
Participant descriptions of continuity and closure: How physicians and nurses can ensure that patients and families do not feel abandoned
This study has limitations worth noting. First, the generalizability of our findings is limited for several reasons. The study occurred in one state, and involved older patients with one of two life-limiting diagnoses who were treated mostly as outpatients. In addition, most of the patients had a family or friend caregiver, were living at home and had a pre-existing relationship with a physician. Furthermore, none of our patients was seen by a palliative care consultation service, although some of the patients who died during study follow-up were seen by hospice before death. These are all characteristics that may limit generalizability to other groups of patients. Second, because the study was designed to understand patient-physician communication, we were unable to investigate the issue of closure for patient-nurse relationships. Because the vast majority of the physicians were men and nearly all the nurses are women, we are unable to comment on gender effects. Finally, our study was not originally designed to study nonabandonment, so could have missed findings if the study had focused specifically on this issue. On the other hand, asking participants to consent to a study about nonabandonment may have resulted in bias resulting from selective participation of patients willing to discuss the topic.
In summary, we found that the professional value of nonabandonment at the end of life consists of (1) providing continuity of expertise and a therapeutic relationship, and (2) facilitating closure of that therapeutic relationship. Our aim in establishing an empirical frame for nonabandonment was to enable the development of interventions designed to improve this aspect of end-of-life care. Future studies are needed to determine whether intervention with clinicians, patients, or family members can prevent or address abandonment.