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by Lyle Fettig

The Journal of Clinical Oncology published a Swedish study which examines correlation between patients being informed of imminent death status and other palliative care quality outcome measures. In the study, 91% of patients were informed of their imminent death status.  How was this measured?  Sweden has a national palliative care registry which is described in the study text (click the little Union Jack at the top right of the page to view the front page in English) :

This online register was completed by the physician and/or nurse responsible for the patient's care during the last week of life, although HCPs were not aware of the research question of this study. The design of the SRPC Web questionnaire does not allow any missing data at submission. The Web questionnaire is based on the 11 principles constituting good death as defined by the British Geriatrics Society and was designed to be used in any care setting, independent of diagnosis, with the intent to look retrospectively at important aspects of care delivered during the last week of life. The 25 items on the SRPC include 14 questions that cover background data of patient and reporting unit and three questions that cover items not considered relevant to the aim of this study (ie, use of visual analog or numeric rating scales during last week of life, frequency of pressure ulcers, and staff reflection). The remaining eight questions covering, for example, degree of autonomy, information about imminent death, symptom control, parenteral as needed (ie, pro re nata or PRN) prescriptions, and preferred location at time of death, were included in the analysis in this study.

The ACP Hospitalist Blog commented on this study in more detail right after the study was released.  I'm going to keep my comments on the results brief.  The bottom line was no surprise.  Being informed of imminent death status correlated positively with more prn symptomatic medication orders, family being informed of imminent death status as well as being offered bereavement services, and patients recorded as dying in their preferred location.  Being informed did not correlate with increased anxiety or pain.  Minor methodological issues aside, this is yet more data (need we more?) to suggest that we should get over the worry about the effect of prognostic information on patients, even at the very end. When we don't sensitively explore patients' wishes for prognostic information and then give them info when they want it, it's usually because of our own discomfort rather than a protective effect for the patient.

What really strikes me about this study though is the existence of the database which made the study possible.  Considering the fact that I would struggle to access many of these data at my own institution, it's amazing that Sweden has a national database and that over 13,000 subjects could be included in the study.  Sweden is not unique in their attempt to measure various outcomes on a population level near the end of life.  See this Canadian study looking at the trajectory of performance status and symptom scores in patients with cancer in the last six months of life. 

Would something like this be possible in the United States? Could we develop a common repository for palliative care outcome measurement for individual patients? What are the true patient-centered outcomes which matter most to our patients and families when confronted with serious illness? 

These questions don't exist in a vacuum and should be viewed within the context of the Accountable Care Act and evolving healthcare system.  The Department of Health and Human Services recently released final rules for Accountable Care Organizations.  The rules document describes 33 quality outcomes which ACO's will need to report in order to qualify for "shared savings" above and beyond Medicare Part A and B reimbursements (see page 324). In the first year of the program, merely reporting all 33 outcomes will be sufficient to qualify for the "shared savings" payments.  In subsequent years, the ACO will need to meet a certain standard to qualify.

Take note of the first ten quality outcomes (all but the last three will be measured by patient survey data):

• Getting Timely Care, Appointments, and Information
• How Well Your Doctors Communicate
• Patients' Rating of Doctor
• Access to Specialists
• Health Promotion and Education
• Shared Decision Making
• Health Status/Functional Status
• Risk-Standardized, All Condition Readmission
• Ambulatory Sensitive Conditions Admissions: Chronic Obstructive Pulmonary Disease
• Ambulatory Sensitive Conditions Admissions: Congestive Heart Failure

The majority of these outcomes are near and dear to palliative care- don't we aim for these day-in, day-out? Palliative care teams can directly influence all of these outcomes for individual patients but also indirectly through local palliative care educational and quality improvement projects.  What other measurable palliative care outcomes correlate with each of these outcomes.  Could some of those other outcomes become standard in future ACO rules?  If you want to help the field (and the American healthcare system) take one small step in that direction, make sure your program applies for TJC Advanced Certification.  In the process, your program will be required to collect/analyze at least four palliative care performance measures on a continuous basis.  High penetrance of TJC Palliative Care Advanced Certification may lead TJC to build palliative care standards into the usual accreditation process for hospitals, etc.   

While I'm rambling on about everything under the sun, the Swedish Palliative Care Registry has a second questionairre that is filled out yearly at a program level (rather than specific to individual patients).  We do already have a registry similar to this: The CAPC National Palliative Care Registry.  Your program should sign up for that, too, if it hasn't already.

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This week the New York Times talks about the rising costs of providing hospice care in America with a particularly juicy hook about a nearly $25 million whistle-blower settlement against an Alabama hospice.  From there it talks about the focus of some hospices to seek patients who are likely to have longer lengths of stay, like dementia and stroke.  One research analyst even goes as far to say "It's a lucrative business, at least under the current reimbursement system."  They also feature an inspector general report that documentation for hospice patients in nursing homes was lacking. 

Not a good start from a newspaper that has actually been quite kind to hospice in the past.  The rest of the article goes on to discuss the various fixes including every hospice medical director's new task: the face to face certification visit.  (We have not yet dedicated a blog post to face-to-face home visits for certification, but one is in the works so we can has that out at a later date.)

But the article leaves out a lot and I feel it is pretty one-sided.  Apparently Don Schumacher, head of the NHPCO, has found some flaws in the article too as he is communicating with the NYT editorial board.  There is relatively little about potential changes to the payment structure to focus greater reimbursement during the first 7 and last 7 days of service when need is thought to be the greatest.  The article does not talk about or reference the article by another NYT reporter from 2007 with the title "In Hospice Care, Longer Lives Mean Money Lost" about the aggregate cap. Nor did it quote the Duke Study that found hospice care saved Medicare an average of $2,300 per beneficiary (OPEN ACCESS PDF), calling hospice “a rare situation whereby something that improves quality of life also appears to reduce costs.”  Yeah, they missed some stuff.

Which is not to say we need to look closely at fraud issues.  Good oversight is important for a multi-billion part of the health care system, but we have to realize that every problem started out as the solution to another problem.  The system is perfectly designed for the outcomes it gets.  So let your legislators know about what hospice means to you.  Talk to your organizations and actually answer the advocacy emails that moment instead of promising to get back to them later.

As the NYT usually does there is no ability to comment on the article but there is a linked blog post at "The New Old Age" which allows for comments.  As of this writing there are 64 comments.  Here are a few I thought stood out:

It is amusing and annoying to be complaining about the costs of hospice care, when in fact hospice patients are forgoing the ER visits, hospitalizations, specialists' visits, procedures, and many medications that Medicare would instead be covering if not for the patient making a decision to pursue comfort care only. So, what was the cost SAVINGS to Medicare by having these people on hospice, even though they stayed on longer than usual? Alot.- ras

I don't even believe desperate old people are gaming the system via hospice. But if they are, it's because this country has utterly failed them, taken payroll deductions for a lifetime in exchange for medical care in old age, and then only given the kind of medical care 70-year-olds need, not 90-year-olds. Shame on us. - jane gross

Hospice is a critical service that is offered to all. It is necessary, compassionate, and well run. So, if we discontinue it or cut services, we are a nation without merit and compassion. We will not only be third world, we should not be in this world. - Julie

The article disingenuously ignores this broader care issue while it exploits an example of an Alzheimer's patient. Please, NY Times, get perspective on the bigger picture. Help the US face its fear of dementia that keeps us in denial and prevents us from preparing to fight a huge healthcare tidal wave. Take more leadership and make a difference. - Suzanne

So it's too expensive to have an MD check on hospice patients once every six months? The health care industry has become even more shamelessly and barbaricly greedy than I thought. - Cowboy Marine

TAYLOR JR, D., OSTERMANN, J., VANHOUTVEN, C., TULSKY, J., & STEINHAUSER, K. (2007). What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program? Social Science and Medicine, 65 (7), 1466-1478 DOI: 10.1016/j.socscimed.2007.05.028

Photo credit: Flickr user:  castle79

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The National Hospice and Palliative Care Organization and it's sister organization the Hospice Action Network are hosting Hill Day in Washington DC on April 6th where they lead hospice advocates from all over the country in meeting with government representatives to talk about the role for hospice in the continuum of our nation's health care delivery system.  They bring the stories and the data to appeal to both sides of the political brain and are meeting with both major parties.

The events started today with strategy sessions to make sure the advocates were prepared with the facts and how to make the most effective use of their time.   I have never attended Hill Day but would invite anyone who is attending this year or the past to write a guest post for Pallimed to recount your experience.  Activities like this are so important as anyone who has heard Diane Meier speak recently about her experience in Washington DC.  Her discussion about optics and the view from the Hill centers around the revelation that comments and public input really do matter despite all the cynicism in the world about American politics.
But you may be thinking, 'But it is too late for me to attend Hill Day 2011, maybe I'll do that next year...'  That is a great start but I am telling you it is not enough to put this off.  You can actually act now and here are just a few ways you can help amplify the voices tomorrow for the future of hospice:

• Write your Congressional representative (using NHPCO's CapWiz system is easy)
• Donate to the Hospice Action Network (it takes staffing to make this all happen)
• Pledge with a friend or colleague at work to do some of the items in this list
• Follow @HospiceAction on Twitter and re-tweet and reply to posts with #HillDay11
• Friend Hospice Action Network on Facebook and engage/support/like their posts (Let's see if we can get them over 5,000! They are at 4,583)
• Make a meeting today with your local government representatives to make sure they know hospice matters
• Ask your company what they are doing to encourage staff to participate in advocacy
• Ask your hospice and palliative peers what you are all going to do for Hill Day 2012
• And you can watch the pep rally/kickoff for Hill Day 2011 on Ustream live at 9am ET to get in on the excitement of legislative advocacy!

And in the Pallimed spirit of asking you to do things I would do myself...

I already sent a letter to Pat Roberts and Jerry Moran (Senator from Kansas) and Kevin Yoder (Congressman from my District); Donated $30 to the Hospice Action Network; Told you about HAN; Have followed HAN on Twitter and RT a #HillDay11 post; Friended on Facebook and engaged; And pledging to you to talk to my company, local peers, and local government in the next month about hospice advocacy.  (
Total time 15 minutes.)

Now imagine if the nearly thousands of hospice and palliative care staff out there would all do any part of this.  What an impact that could be!

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Driving home tonight, as usual, I was listening to NPR. This time, the voice on the radio was honestly confronting the controversial topic of rationing – specifically, rationing in England. In recent evaluation of palliative care and end-of-life care around the world, England was ranked #1 – and as a result many countries healthcare leaders have visited the UK to learn from them. One of these countries was the United States – and as pointed in in Public Radio International (PRI) – this dialogue between England and the US was stopped after controversy about the “death panels” hit the front pages.

Around that time, Time Magazine published a story putting the pricetag on life – adding to the controversy.

More recently, in April of 2010, PBS hosted a debate on the topic featuring Ira Byock, Physician and Director of Palliative Care at Dartmouth-Hitchock Medical Center, Ken Connor, Lawyer and Chair of the Center for a Just Society, who represented Jeb Bush in Terri Shaivo’s case, and Marie Hillard, Nurse and Director of Bioesthics and Public Policy at the National Catholic Bioethics Center.

PRI has put this story back on the news – and given our place in healthcare, we cannot hide from the controversy as inevitably, in one way or another, we live smack-dab in the middle of it all. Our views on this topic also differ – and so I invite a discussion here.

Note: PRI has created a series about healthcare rationing in England, South Africa, Zambia, and India. Additionally – for all you TweetChatters: @PRITheWorld, @SheriFink and @dhbaron are also hosting another tweetchat on Thursday 1pm EST with the hashtag #rationinghealth.