Skip to main content

CoPs - obstacle, or inspiration?




by Jerry Soucy, RN, CHPN

The title of Amy Getter’s Geripal piece poses a critical question: As we face forces seemingly beyond our control, how can we stay true to the purpose of hospice, and to our patients and families? 

I share Amy’s concern. This is difficult work under ideal circumstances. We frequently face demands that compete for our time and attention. When the demands are in conflict, sources we expect to support us sometimes don’t seem very supportive.

Amy calls the Medicare Conditions of Participation (CoPs) overwhelming. I’ve worked with colleagues who see them in an even more negative light: as irrelevant, not very helpful, or even an obstacle to effective and compassionate care.

The law can seem byzantine for those of us without legal training, but I think it’s worth the effort to understand, internalize, and act on the values expressed in the CoPs. The logic and structure will become more evident as you read, and every hospice clinician will recognize the language, because it’s the foundation of our practice.

I’ve endured countless mediocre inservice and online programs on the topic. I bet Amy has, too. In my experience, negative comments about CoPs at IDG, in orientation, and elsewhere are frequently accompanied by nonverbal language that screams “Bear with me, even though we’d all rather stick needles in each others’ eyeballs.”

I disagree. I also don’t like needles. We should draw upon the CoPs to inform our actions, and share what they say about the spirit and purpose of hospice with the public.

Instead of fearing or scapegoating CoPs, or shunning them as snooze-inducing, overly-complicated, or of questionable worth in the “real world,” let’s consider them in the same way dedicated baseball fans consider that game’s rules: the final arbiter of the most basic question - “What is this all about?” - and the source of every critical element that makes the game possible.

We practice under authority granted by the CoPs, just as we practice within the scope of our state-issued licenses. They are the law, and a basic fact of our professional lives. They are also a great roadmap, providing both clarity and detail. Entire phrases can be lifted to answer anyone who asks, “You work in hospice - what’s it about?” 

Officially, they’re 42 CFR Part 418 - Hospice Care. Here’s a quick exercise: Grab a copy (pdf), and find § 418.52 Patient’s rights. Start your reading there, or skip ahead to (c) Standard: Rights of the patient. “The patient has a right to the following:  (1) Receive effective pain management and symptom control from the hospice for conditions related to the terminal illness;  (2) Be involved in developing his or her hospice plan of care; (3) Refuse care or treatment; (4) Choose his or her attending physician; 

Rights 5 to 8 address confidentiality, being fully informed about what will and will not be provided under the benefit, and the right to be, “free from mistreatment, neglect, or verbal, mental, sexual, and physical abuse, including injuries of unknown source, and misappropriation of patient property.” 

I don’t think any hospice clinician disagrees. There’s plenty more good stuff where that came from.

Amy's practice is informed by the patients who have shown her, “time and again to STOP, leave my agenda behind, LISTEN to their hopes and desires…” She’s given us a prayer to recite quietly each time we enter a home. 

Her insight joins this reminder: we are engaged in an approach to caring that has been proven to improve the quality of life of patients and their families, allows a patient to remain at home for as long and as comfortably as possible, and with dignity.

I got that from page 32088 of the Federal Register / Vol. 73, No. 109 / Thursday, June 5, 2008 (pdf). I played with the structure of the statement, but didn’t change any words.

You never know where a helpful phrase might pop up.


Photo: image of the Federal Register from the public domain

Comments

Amy Getter, RN, MS said…
Jerry; I still maintain that an entire notebook of regulations is cumbersome, but the CoPs are part of standardizing hospice care which is extremely important considering the vastly increasing numbers of hospices throughout the country. The CoPs are the rule book, indeed the “road map”…and help keep everyone honest. Thanks for clarifying, in case anyone thought we could do away with them! Along with regulatory guidelines, the hospice team must be educated and prepared to meet the needs of a dying patient…but getting “back to basics” and at the heart of hospice is the incredible privilege to be invited in, hear the stories, and walk alongside a family in crisis. Amy
Jerry said…
You're right, Amy - it's all about what happens at the point of care.

Popular posts from this blog

Caring, and the Family Caregivers We Don’t See

Over lunch at a restaurant in Manhattan, my father and I talked about long-term care insurance and the emergence of senior centers and nursing homes across the U.S. that offer a variety of ethnic cuisines and cultural events, catering not only to a growing population of adults over 65, but also, to an increasingly diverse population of adults who call the U.S. their home. This conversation was different from many similar ones before it – we weren’t talking about my research; we were talking about our own lives.
My parents immigrated to the U.S. in the late ‘70s and early ‘80s, following their parents’ advice on professional opportunities that seemed unimaginable in India at the time. Although they considered moving back soon after to care for their aging parents and to raise children, they ultimately decided to stay in the U.S. As I chronicled earlier, my paternal grandparents lived with us until I completed middle school, at which point they returned to India and lived with my mater…

Length of Stay in Nursing Homes at the End of Life

One out of every four of us will die while residing in a nursing home. For most of us, that stay in a nursing home will be brief, although this may depend upon social and demographic variables like our gender, net worth, and marital status. These are the conclusions of an important new study published in JAGS by Kelly and colleagues (many of whom are geripal contributors, including Alex Smith and Ken Covinsky).

The study authors used data from the Health and Retirement Study (HRS) to describe the lengths of stay of older adults who resided in nursing homes at the end of life. What they found was that out of the 8,433 study participants who died between 1992 and 2006, 27.3% of resided in a nursing home prior to their death. Most of these patients (70%) actually died in the nursing home without being transferred to another setting like a hospital.

 The length of stay data were striking:

the median length of stay in a nursing home before death was 5 months the average length of stay was l…

Top 25 Studies in Hospice and Palliative Care (#HPMtop25)

by: Kara Bishoff (@kara_bischoff )

Back in 2015 we wrote a post asking for input on what articles should belong on a list of the top 25 articles in hospice and palliative care.   We decided to focus on hospice palliative care studies and trials - as opposed to review articles, consensus statements and opinion pieces.

Here’s what we came up with. It was hard to pick just 25! We highly prioritized clinical utility and tried to achieve diversity & balance. Many others are worthy of inclusion. Take a look and let us know if you have suggested changes for next year.

Module 1: Symptom Management
Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi Y et al. JPSM, 2013.Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study. Currow DC et al. JPSM, 2011.Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomise…