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.
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:
- http://newoldage.blogs.nytimes.com/2014/06/17/how-to-choose-a-hospice/
- http://americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/
- http://www.caringinfo.org/files/public/brochures/Choosing_Hospice.pdf
Photo Credit: ©2014 Nancy Lundebjerg
10 comments:
One problem I find: patients become bonded with their home health provider. When it is time to transition, the HH provider pushes the sister hospice and the patient's go for that despite recommendations to use a different organization. Although I read a lot of complaints about funding for hospice, there must be money in it since, in my rural community, every HH seems to have a sister hospice. As you point out, it isn't done very well in most cases (and I am horrified by the lack of knowledge they have re: palliative care as is belied by the nature of their requests).
I read with great interest your article Not All Hospices Are Alike. In July of 2011 my wife entered the hospital to have have a pleural effusion drained due to her cancer. She was diagnosed in 2009. The draining was not successful.
Her health was deteriorating and were recommended home hospice. Shortly after her oncologist, primary care physician, and hospice medical director recommended in unit hospice. I was crest fallen thinking I was a failure but in reality the entire team was consider both Donna and me. In 20/20 hindsight I see that that decision gave me more time to be with her and manage her care not simply be her caregiver. It was our time to find our way to EOL. I am sharing this because the hospice and her team cared for both of us. The care they gave her and me during her 18 days in hospice was nothing short of brilliant. Following her passing I have written and podcast about EOL, HPM, hospice, etc and have spoken with many. I remain struck by the sense of anger many survivors have because they did not receive HPM or hospice. I have tried to write and podcast about its benefit to not only what it offered Donna but, provided me as a caregiver. Below is a post on that topic. And there are many podcasts on these topics at www.bioc.net. I hope my humble opinion that my reflections and thoughts on this can help others.
How Hospice Saved My Life
http://www.bioc.net/blog-2/2012/6/10/grief-and-depression-how-hospice-saved-my-life.html?rq=Hospice%20saved
Wow. Thanks for saying what most of us are thinking.
It's sad but true, there are hospices operating out there that should probably be shut down (I'm pulling my punches here). Then there's the big fat middle of mediocrity in the distribution curve, followed by the consistently outstanding hospices that are the other outliers.
My own observations and experiences are consistent with the author's. There are many differences between home care and hospice, and many of the differences are enormous. A great home care agency doesn't automatically also provide great hospice care.
That's like saying a restaurant probably has great food because they've got a terrific bartender.
Such agencies compound the problem by forcing the home care model onto hospice. The worst aspect is their emphasis on "doing the visit." They're visit machines.
As the hospice team supervisor (a home care old timer who switched to "the hospice side" because she wanted less stress) told me at one such agency, "I just need bodies to throw out there." Bodies = nurses, out there = patients and families on hospice.
That's just for starters. Add in a medical director who follows the 3S model - Show up, Shut up, and Sign - and we're on our way.
Most of the staff in these settings want to do good work, but they get very little support (respect, regard, pay, education for professional growth, effective modeling, emotional support in the context of continuous stress, and on and on).
Most of the staff in these settings, especially nurses, are outright abused.
Being a standalone hospice also doesn't automatically mean it's any good.
I could go on, and I know I'm not the only one.
What's the answer? Good question.
This is so true. All hospices are required to adhere to an extensive set of standards, policies, staffing requirements and more, yet the differences between them are vast.
Of note, however, the difference between "palliative care" programs is even greater--by far-- than the difference between hospice programs. One program has multiple experienced, fellowship-trained physicians heading up an interdisciplinary team. The next has only an untrained doc with a little hospice experience. The third ne might only be a nurse or a social worker. All of these are called "palliative care," and the assumption that many hospitals, oncologists, and others have is that they are all the same. So, data that shows that trained physician (or at least highly-trained NP) consults have a huge impact on both QOL and survival is about "palliative care" so is presumed to extend equally to a nurse or SW consultation.
Again, no easy solution (although the argument for interdisciplinary "palliative medicine" services is worth considering.) But the fallacy that palliative care is all the same is even less true than it is about hospices!
I have been familiar with Patrice Villars work since the '80's and a shared oncology nurse focus. I have so much respect for the professional and still frank manner she laid out the issues. Going the "extra mile" to research the hospice MD with the medical board is simply another example of nurse advocacy for patients. While I'm sure it wasn't easy, Mr & Ms Brianna were the fortunate recipients of excellent nursing care, even from a distance. Hospice X just did not do the providing of that care.
Another resource for family caregivers: the Next Step in Care guide on hospice and palliative care,available in English, Spanish, Chinese, and Russian at http://www.nextstepincare.org/Caregiver_Home/Hospice
Carol Levine
I couldn't agree more. I worked in hospice as an LPN for a while, developing a strong passion for palliative and EOL care. My last hospice employer, at the time of my hire, was a stand alone company, not long after I started they were bought by a well known home health company. Although this company thrived in the home health department it had historically not done well in the area of hospice care.
As someone stated above "such agencies compound the problem by forcing the home care model onto hospice", and that is exactly what happened. The home health agency came in and changed everything, and not for the better. They essentially took a successful hospice and turned it to shit, overworking nurses and underutilizing all other staff and resources, ignoring the requests and suggestions of those employees that actually knew what was going on! They would cite Medicare regulations inaccurately and ignore the nursing scope of practice altogether.
I was always thrilled when "corporate" would stop by for a visit (to tell us what we were doing wrong by their standards) from California, unaware of the scope of practice for the state they are actually in (hint-not California or anywhere close).
I could go on for days about this, it gets me pretty heated, but I won't. My only advice for those in need of hospice is to do your own diligence, check them out before making a decision! Finding a good one may be difficult, but they are out there.
I am going to address the gorilla in the room. While there are many good hospices that are for-profit, and many poor hospices that are non-profit, the preponderance of the problem hospices, especially the ones passing out party favors at the nursing homes to recruit patients, are the big for-profits. I have written about this: http://www.ncbi.nlm.nih.gov/pubmed/21561517, "In the Business of Dying: Questioning the Commercialization of Hospice" in the Summer 2011 issue of the Journal of Law, Medicine, and Ethics. The New York Times, Washington Post, and Huffington Post have all covered this topic as well. For-profit may work wonderfully to bring us flat screen TV's but I'm not sure it works so well in health care.
I am looking into hospice for my mother. She is no longer able to take care of herself anymore so we are looking for a way that we can help her. I am researching about hospice to see if this would be a great option for her. This blog was really informative and helped me understand hospice a lot better. Thanks for sharing this blog.
Very interesting and eye-opening article. I have been speaking a lot about hospice lately due to a soon-to-be-published memoir I wrote called 14 Days: A Mother, A Daughter, A Two-Week Goodbye.
The memoir is a chronicle of my mom's final 14 days of life. I talk a lot about hospice in the book and how it was a life-saver (no pun intended) for us as a family and how it made my mom's transition seamless. A friend of ours, however, had a completely different experience when her husband passed away with a supposed reputable hospice. I always thought that she was simply being "picky" or "demanding." But perhaps the hospice was was not performing up to par and her concerns were valid.
I guess it's like most industries. Once something becomes successful, the bad seeps in to undermine it. It's very sad that that happens.
Meanwhile, for all of you who work in hospice, and are "the good guys," I want to thank you for all of US who have benefited from your heart and hard work. And, thank you for this article. I'm going to do some more research so I can have this information on hand should it ever come up.
Lisa Goich
www.14daysamemoir.com
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