The Paradox of the Live Hospice Discharge

by Don Zacharias

For some time, I have had an interest in the complexities of the Live Hospice Discharge. What would seem to be a happy occasion for the patient and family (going off hospice!) is often a time of unexpected stress, and the transition off hospice can be as complicated as the hospice admission. In many cases I have noted mixed feelings as the patient goes from the ranks of the “dying” to ranks of the “living”. Sometimes the patient verbalizes those mixed feelings with statements like, “I guess I’m I not dying fast enough!” One family was heard to report discharge from hospice felt like a “divorce”.

And the public is becoming more aware of hospice discharges. As Paula Span (1) points out in her New York Times post 'Bounced From Hospice':

 “. . . hospices have lamented for years that dying patients wait too long to call . . . and then, in a substantial minority of cases [the patients are] getting bounced.” Furthermore, “. . . families that have agonized about the decision and finally called for help then feel betrayed when hospice withdraws . . .”

I began to wonder if the difficulty I saw with a fair number of hospice discharges was a random occurrence, something related to a specific patient population or something more universal. To get a better understanding of the Live Hospice Discharge I searched for articles that might provide some insight.

Most of the articles found discussed the statistics that we are familiar with – that about 20% of hospice patients are discharged alive from hospice, 1/3 initiated by the patient or family, and 2/3 initiated by the hospice program, mostly due to an extended prognosis (2). The 6 month mortality for this discharged group is about 35%, indicating that many patients were still appropriate for hospice care. And about 31% of those that do die within 6 months of discharge never get reenrolled. (3,4)

I was finding very little written about the emotional aspects of the Live Hospice Discharge until recently finding an published article (5) discussing this topic, authored by Assistant Professor Rebeka Watson Campbell at the University of Texas Medical Branch at Galveston School of Nursing. This study chronicled the experiences of patients and families discharged alive from hospice programs in Texas. From the interviews, there were a number of recurring themes of unexpected suffering discovered among the hospice “graduates”, their families and their caregivers. The themes of suffering included: abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, anticipation of future physical decline, and the ongoing strain on the family and caregivers that are bearing seemingly endless witness to their loved one’s slow dying process.

This article brought to my attention how widespread the problem of the hospice discharge can be. Often patients that improve on the hospice service will rightly attribute their ability to go off hospice directly to their excellent hospice care. And, when faced with losing the care that they have come to depend on, they can understandingly feel stressed and disappointed. Without hospice care, the improved quality of life that has become their new baseline is now uncertain. Supporting the patient and family during this time of transitions involves a real team effort that includes early anticipation of a potential discharge, special counseling and thorough coordination of care. Being tuned in to the themes of suffering can guide the development of a bridge program for discharge:

START EARLY
Based on the depth of suffering reported with Live Discharges, it would seem important to start planning early on for a possible later discharge, especially when the patient has a non-cancer diagnosis with potential for improvement. It could be beneficial in some cases to briefly discuss the potential for a later discharge as early as the first visit. The subject could then be brought up gently at future visits when appropriate. These discussions might help prevent the shock that often occurs when the discharge topic arises late in the course of care.

PRESENT DISCHARGE IN A POSITIVE LIGHT
With all discharge discussions during the course of care, keeping a positive spin on the discharge would seem important, always making it clear that the hospice program has an open- door policy should re-admission be needed. Keeping too positive a spin on a discharge might encourage false hope of a recovery, though. Going off hospice could be presented as just one possible outcome when presenting the best, the worst and the most likely scenarios.

FOSTER INDEPENDENCE
Some patients and families can show an excessive dependence on hospice early on and could be candidates for a difficult discharge down the road. Fostering independence, important with all hospice patients, would appear even more important with this population.

PROPER DOCUMENTATION
The time to document the discharge plans in the patient’s record would be after that shared decision is made. Prior to this time, the record should only indicate that the policy for discharge was discussed. Once the record mentions and demonstrates that the patient is no longer hospice appropriate, then, a date for discharge should be set, the plans outlined in the chart notes and the discharge program set into motion.

COORDINATE DISCHARGE PLANS
The discharge plan needs to be clearly understood by the patient, the family and the entire hospice team. There should be assurance that on discharge there will be reliable caregiving. Transition of any needed durable medical supplies to a new DME provider should be timely. An adequate supply of listed medications should be provided.

There should be arrangements for follow up with the patient’s Primary Care Provider (PCP). Often the PCP has deferred many decisions to the hospice team. Ongoing updates to the PCP while the patient is on hospice can help keep the PCP “in the loop” so when the PCP gets that call to coordinate follow up care, he or she will feel more on top of things, more likely to provide good follow up care and less likely to feel suddenly burdened with their patient. A visit by the hospice doctor prior to discharge can reinforce the plan for post-hospice follow up and ongoing care. This could also be a time to explore any unanswered questions. It is also an opportunity to clearly outline the indications for hospice reenrollment.

PROVIDE ONGOING CONTACT
On discharge, following through with phone contact is essential. Routine phone follow up from the patient’s Case Manager, Social Worker, Aide or other staff member should help dispel some of the loneliness, frustration and uncertainty. Continuing some volunteer services can provide an additional level of contact.

The article by Dr. Watson Campbell is eye-opening and promotes a better understanding of the effects of the Live Discharge. It should encourage the planning of a smooth transition plan off the hospice service, helping the interdisciplinary team, the patient and the family better handle the emotional “paradox” of the hospice discharge while getting the patient re-enrolled at the right time.

Don Zacharias MD is a Hospice Physician with Hospice Maui and also with First Call Hospice in Citrus Heights, California. He was a busy Family Practice doctor in Sacramento for 35 years. He and his wife moved to Maui in 2013 where he enjoys hiking, ocean activities and playing piano. You can find him on Twitter @donzhawaii

Acknowledgement – Thanks to Dr. Rebekah Watson Campbell and to Hospice Social Worker Megan Crouse for their valuable input.

Photo Credit: 'running eshcer-ed' by izaarbeltza via Flickr Creative Commons

References
1. P Span: Bounced from Hospice. The New Old Age (blog) Jan 7, 2014

2. JM Teno, M Plotzke, P Gozalo, V Mor: A National Study of Live Discharges From Hospices. J Palliat Med 2014 Oct 17 (10). 1121-7

3. JS Kutner, SA Meyer, BL Beaty, CT Kassner, DE Nowels, C Beehler: Outcomes and Characteristics of Patients Discharged Alive From Hospice. J Am Geriatr Soc 2004 Aug: 52(8): 1337-42

4. K LeSage, AJ Borgert, LS Rhee: Time to Death and Reenrollment After Live Discharge From Hospice: A Retrospective Look. Am J Hosp Palliat Care 2014 May20 [epub]

5. R Watson Campbell: Being Discharged from Hospice Alive: The Lived Experience of Patients and Families. J Palliat Med 2015 Feb 26 [e pub]