TRANSITIONS

People living with serious illness experience transitions, defined as "a process or period of changing from one condition to another." Joe, a 78-year-old farmer and grandfather, has been living with renal disease for decades, receiving renal dialysis and balancing his chronic illness with a full work and family life. But recently, Joe has been hospitalized several times, his "good days" are fewer, and he is beginning to feel that the dialysis is more of a burden than a benefit.

Maria, a 42-year-old woman with 2 young children, has aggressively fought metastatic breast cancer for 4 years. Maria has endured every available treatment, as she fights to live so she can care for her children and her own mother who has diabetes and heart failure. However, the last cancer clinical trial Maria participated in caused severe side effects and she was hospitalized and in the intensive care unit. She is now wondering if continued cancer treatment may hasten her death rather than prolong her life.

Transitions are difficult. Transitioning from one place to another means letting go of what was. Transitions often involve moving toward the unknown. Patients considering a transition from disease-focused care to palliative care are profoundly aware of the overwhelming significance of not going in for the next treatment. Transitions are also a time of deep emotion and existential awareness-"this change means my life is ending."

Hospice and palliative care nurses are central to this experience of transitioning. Every hospice nurse knows that the initial visit to enroll a patient on hospice is much more than a change in care. It is a life transition. To agree to a palliative care consult or to enroll in hospice is, for many, the moment of truth-a truth that life will end.

Transitions and their accompanying life reality remain one of the most significant obstacles to fully realizing the benefits of palliative care. Patients and families living with serious illness often reach a point of transition and respond to an offer of palliative care or hospice with a resounding "not yet." Unfortunately, many clinicians approached to consider a palliative care consult or hospice referral for their patient also struggle with transitions and offer the same "not yet" response.

I was reminded of the importance of transitions as my colleagues and I recently completed a study funded by NCI, testing a palliative care intervention for patients with solid tumors who were beginning a phase I clinical trial.1 We studied 479 patients who were at a critical transition point as they had advancing cancer, they had exhausted traditional therapies, and they now sought participation in a phase I trial.

Although the outcomes (quality of life, symptoms, distress) of patients receiving the palliative care intervention were the key variables of interest, the data describing the patients' actual care at this transition were most alarming. The median survival of these patients from entry on the trial to death was 10.1 months. However, only 16.5% were seen by palliative care, only 39% who died were referred to hospice, and only 30.7% received hospice care. In this population of very ill patients clearly in transition, only 39% had an advance directive and 65% remained full code status.

Patients who were interviewed as a part of this study expressed their belief that there would always be another treatment available.2 One patient said, "[horizontal ellipsis]My doctor said that he had a lot more weapons in the shed to really attack this." Patients also expressed the avoidance of thinking of death. One patient expressed, "But if this trial were to stop working[horizontal ellipsis]he said something else will come along. You're gonna live a long time. I need to hear that. Because if I think I am dying, it's paralyzing." Patients also expressed faith and belief in God. Many patients acknowledge that although they did not know if the clinical trial would benefit them, they wanted to participate to help others. One said, "God put it in my heart to give back, pay it forward, be a blessing[horizontal ellipsis]this study could help someone in the future." Others described that their faith in God was helping them survive. As one patient said, "I think God is doing the work, too. I think it's not my time yet. I know science has limits, but God has no limits. God puts science and doctors and medications to cure, but at the end of the day God has the last word."

Nurses can listen to the beliefs and values of patients to support them in their decisions. The most important lesson from these data was that patients and families do not receive the full extent of palliative care and hospice that could greatly improve symptoms, address quality of life concerns, and offer psychological and spiritual support.

Nurses are transition specialists. We listen to fears, we assist patients and families as they face the unknown, and we sit with the silence. We advocate with our colleagues to move beyond that terrifying abyss because we know what awaits when palliative care patients and their families are held closely in the arms of palliative care throughout the transition. The articles in this issue of the journal, and most every issue, speak to this role of nurses as transition managers.

Managing transitions will remain one of the greatest challenges of our field in the decades ahead. Continued advances in medicine and promises of cure make transitions to comfort-focused care even more avoidable. Our aging population prompts families to say, "But everyone in our family lives to be 100." The allure of medicine offers new reasons to avoid the reality of death. Kralik and van Loon3 wrote about the transition experience in chronic illness saying that "The chronic illness experience is variously described as-a trajectory, a gift, a career, a cause of sorrow, suffering and uncertainty, loss, a dichotomy between acceptance and denial, and transformational."

An overburdened health care system and an ever-growing body of evidence of the benefits of palliative care mean that we must do better in helping our patients through transitions. There is no one better than a palliative care nurse for the job.

Betty R. Ferrell, PhD, FAAN, FPCN

JHPN Editor-in-Chief

References