by: Patrice Villars
We all want the best possible end of life care for patients, our families, ourselves. Most of us don’t have a clue that Not All Hospices are Alike.
Here is one story (patient identity and characteristics have been changed to preserve anonymity):
Brianna, a 61-year-old woman with metastatic esophageal cancer and renal insufficiency, had been served by our outpatient palliative care clinic for over two years, alongside our oncology team. She had been previously referred to a home health agency by her primary care provider’s RN for assistance with medication management, physical and occupational therapy. So when the time came to transition to hospice care at home, the RN referred Brianna to the home health agency’s ‘sister’ organization, Hospice X. Easy peasy.
Not long after she was admitted, I started to receive phone calls from her partner (I’ll call him Mr. Brianna) re. unsatisfactory pain management and requests for opioid medications refills the hospice agency, per Mr. Brianna, didn’t cover., specifically, her methadone for long-acting pain control and oxycodone for breakthrough pain. When I called Hospice X to inquire about her condition and discuss her plan of care, I was unable to reach anyone who had access to her record or knew her situation. The hospice supervisor, upon my request, returned my call to discuss my concerns. She gave me a run down on Brianna’s vitals, reported that her pain was controlled, then read me a couple lines about what hospice is supposed to cover per Medicare guidelines. Then she ‘looked up’ whether or not methadone or oxycodone was covered. Clearly, I was talking to someone without expertise in hospice care or the hospice Medicare benefit, much less anyone who could work with me to develop Brianna’s care plan.
Within a few hours, I received a call from Hospice X’s medical director. “I’m a palliative care doctor… medical director of Hospice X”. We discussed my concerns regarding Brianna’s experience of her unsatisfactory symptom control. She was now taking almost 300mg of oral methadone a day. “What is your plan”, I asked, “for symptom control when she is no longer able to swallow safely at the end of life?”
“I guess I should think about that”, he replied. OK, this is when I went internally ballistic and knew that was not a ‘hospice’ agency that understood end-of-life care. He started to ‘educate’ me that liquid morphine is used at that time. (Fill in your own personal outraged reaction here.) After an easy Google search of the physician, I learned he was not board certified Palliative physician (I suppose it would have been worse if he were) and that he had a disciplinary action against him from the Medical Board within the past year for inadequate record keeping.
Long story short, after numerous concerns by Ms. and Mr. Brianna, including:
- Every time a nurse came to the house, s/he brought someone who sat in the car during the home visit. (HIPPA violation?), making them both feel unsafe.
- Hospice X wouldn’t refill her oxycodone (not on their formulary, despite renal insufficiency with baseline creatinine of 3.0).
- The nurses counted her pills at every visit to make sure she didn’t take too many, which made her feel like she was doing something wrong or bad if she needed more to control her pain.
- Her symptoms (pain, nausea, insomnia) were getting worse, not better.
Brianna and her partner tried to work with Hospice X; they felt uncomfortable ‘firing’ them and transitioning to another agency. Brianna liked one of the nurses. Mr. Brianna, with our strong recommendations, finally let hospice X know they were dissatisfied and wanted to change hospice agencies to Hospice SH. Hospice X discharged (not transferred) her, stating she did not meet hospice eligibility, as she wanted “aggressive” treatment, inconsistent with the hospice benefit. (Which, I suppose, is partially true. She wanted aggressive pain and symptom management.)
Finally, I was able to get her admitted to Hospice SH (super hero). At the second home visit, the Hospice SH nurse called me to discuss transitioning her care to their (beautiful) inpatient hospice house for patients who require acute symptom management at the general inpatient (GIP) hospice rate. They had already made two visits to the home that morning, offering intensive symptom control, emotional support to Ms. and Mr. Brianna, and in-depth discussions about potential settings for ongoing care.
I have been blessed to have worked with two amazing hospice agencies in my career and have high standards. – high, achievable standards. The hospice world has changed dramatically since I left that work ten years ago. In my institution, all nurses, discharge planners, social workers, and physicians can refer to any hospice agency. Hospice Xs and Hospice SHs look the same to most families and health care professionals unfamiliar with the nuances of hospice and end-of-life care needs. In my experience, many hospice Xs market well – flyers, lunches, office paraphernalia with logos, etc, offering programs that claim to smoothly transition from home health to hospice. These programs may serve the referring providers well, but not necessarily the patients/families.
Be careful out there. Not All Hospices are Alike.
Here are some links to help with choosing an agency:
Photo Credit: ©2014 Nancy Lundebjerg