A physician colleague of mine was unable to discharge a patient to home with hospice care because the nurse case manager at the hospital thought the patient would not be “safe at home,” despite the fact that as a quadriplegic, he had been living on a respirator at home for some time with the assistance of his personal care attendants (PCAs).
Because the case manager had failed to communicate to the contracted hospices the full scope of care that the patient was receiving at home from his PCAs, the patient was rejected by all of them. The one hospice that was willing to accept him was not contracted with his insurance company, although the insurance company did review the case for four days.
The Patient Self-Determination Act (PSDA) became effective in 1990, a federal mandate affording people the right to determine how they will die. The PSDA requires institutions to provide patients the opportunity to put their wishes in writing.
In 1995, the SUPPORT study found that practitioners were not adequately trained in communication techniques regarding end-of-life care (JAMA. 1995;274:1591-1598). This landmark study incited the palliative-care movement and standards that hospitals are now required to meet for Joint Commission on Accreditation of Healthcare Organizations (JCAHO) accreditation.
We have, however, a layer of bureaucracy in health care: insurance regulators determining where a patient will die based on information from well-intentioned but inexperienced case managers. We also have the artful subliminal messages of the extreme right and the media blitz of “death panels/offing granny/pulling the plug.” In the midst of this noise, the most important voice is lost — that of the patient who lies in an ICU, losing precious days at home, where he or she wants to die in peace.
A year before he was appointed head of the Centers for Medicare and Medicaid Services, Donald Berwick proposed the following definition for patient-centered care: “The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity and choice in all matters, without exception, related to one’s person, circumstances and relationships in health care” (Health Affairs (Millwood). 2009;28:w555-w565).
Misguided compassion of inexperienced clinicians coupled with the noise of zealots has set us back in the pursuit of peaceful death, failing to achieve the basic goals of patient-centered care. Fragmented, bureaucratic health-care delivery in which insurance reviewers spend precious days and thousands of dollars going over a case further marginalizes our patients, making the goal of peaceful death more elusive.
In this case, the primary nurse practitioner, Mary, had a longstanding relationship with the patient, an d Mary and the patient’s primary-care physician collaborated to communicate with him in a patient-centric way, yet they ended up battling with a case manager, an insurance company and a network of hospice providers to have their patient’s voice heard. If not for the patient-centered philosophy of one hospice that was able to say, “Yes, we will provide hospice care to a man on a respirator,” the patient would have died in the ICU, his wish to die at home surrounded by family and friends denied.
Ironically, as a quadriplegic, the patient fought so hard to stay alive for so long, and in the end, he fought to die in peace. Dying in peace should not be such a struggle.
Peg Ackerman, DNP, APRN, is Director of Education at Commonwealth Care Alliance (Charlestown, Mass.), and an assistant professor at U Mass Worcester Graduate School of Nursing.