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Future Trends-End of Life Care - Gretchen Brown & True Ryndes
By: Hosted by Gretchen Brown & True Ryndes

Gretchen Brown

Gretchen Marcum Brown, MSW, has been the President and CEO of Hospice of the Bluegrass since January 1982. Ms. Brown is a past member of the Board of Directors of the National Hospice Organization. She has chaired numerous committees for both the NHO and the Kentucky Association of Hospices, and she continues to work in differing capacities for each of those organizations. In 1997, Ms. Brown was appointed a member of Care 2000, a task force established to recommend legislative proposals on improvements in the efficiency and economy of the health and human service delivery system in Kentucky.

Currently, Ms. Brown is the Chair of the National Hospice Work Group, a "think tank" composed of leaders from around the U.S. considered to be among the most influential authorities on end-of-life care in this country. Additionally, she serves on the Board of HealthKentucky and the Bluegrass Mental Health/Mental Retardation Board. Most recently she as appointed by the Governor of Kentucky to the KY Breast Cancer Task Force and has been recruited by the National Hospice Organization (NHO) to Chair a Task Force on Access and Quality in follow-up to the recommendations made by NHO's Medicare Hospice Benefit and End-of-Life Care Report.

Ms. Brown received her BA from the University of Kentucky in 1971 and her MSW from the same institution in 1973. She is a member of the volunteer faculty for the Colleges of Social Work and Allied Health.

Gretchen M. Brown
President & CEO
Hospice of the Bluegrass
2312 Alexandria Drive
Lexington, KY 40504
859/276-5344
gretchen@hospicebg.com















 

 True Ryndes

True Ryndes, ANP, MPH

President and CEO, National Hospice Work Group, Vice President for Mission and Policy San Diego Hospice

Since the early 70's, True Ryndes' career has been focused on care of those who face life-limiting illness. A Master's prepared nurse practitioner, he has been a senior and executive officer in two of California's largest hospice programs: San Diego Hospice (1986-1992, 1998-present) and Home Hospice of Sonoma County (1992-1998).

Mr. Ryndes has been at the forefront of advancing public awareness of hospice care at local and national levels. In 1977 he co-founded the first hospice service in Minnesota, later serving as a consultant surveyor for hospice accreditation for the Joint Commission on Accreditation of Health Care Organizations (1982-87). As loaned executive to the National Hospice and Palliative Care Organization (NHPCO), he is currently exploring the feasibility of establishing a formal self-regulation process designed to diminish variable performance among hospice programs nationwide.

In 1996, Mr. Ryndes was the editor of the landmark NHPCO document, "A Pathway for Patients and Families Facing Terminal Illness." Using a consensus building approach involving more than 500 hospice clinicians and managers, the Pathway Task Force identified the specific end-result outcomes that hospices help patients and families achieve, the instrumental outcomes that clinicians must address to achieve those goals, and the utilization outcomes sought by managed care providers and other payers. Under Mr. Ryndes' leadership, NHWG and NHPCO--aided by staff from HCFA and JCAHO--are currently involved in constructing and testing appropriate performance measures and quality indicators for the end result outcomes.

For more information, contact:
True Ryndes
President and CEO
4745 Miracle Drive
San Diego, CA 92115
P: 619.582.2373
F: 619.582.2393
E: Tryndes@aol.com
Assistant: Donna Tipps @ San Diego Hospice. 619.688.1600. Dtipps@sdhospice.com

 

Q 1 I have alot of questions about the role that employers and managed care companies may play to ensute that quality hospice care is available and accessible. Please answer any or all of these questions. What can a concerned employer do to ensure that good hospice care is available to its employees? What can an employer to do negotiate for high quality hospice care with a managed care company? What hospice benefits should be offered? How should the quality be monitored? What can employers and managed care companies do to ensure that employees understand how to use hospice care to their benefit?

Naomi Naierman, President and CEO, American Hospice Foundation
by naomion May 8, 2000 8:12
A Concerned employers can and should, whether self insured or utilizing managed care or other insurance, make sure that hospice care is included in the benefit. Large employers can almost always make sure hospice is a benefit. In my experience the cost is either non existent or nominal. There is a challenge for smaller employers who may not have the clout to change a benefit. As the entity that pays the bill, asking about hospice raises the insurers awareness of the importance.

Employers can ask the Managed Care Organization about the standards used to select hospices (and other providers) in areas where there are multiple hospices. Again in my experience working in areas that have high managed care penetration, the paperwork demands from many of the managed care entities are intense. They ask about accreditation, licensure and certification--and request reports; they look at financials, ask about Quality Improvement, request CVs of the medical director and key staff etc. With the exception of patient/family satisfaction data, financial solvency etc I am not sure that really the ability to produce this material directly relates to quality care. It does show the ability to handle a complex task!

In thinking about the benefits which an employer/insurer should cover, I believe the basic package is the set of medicare benefit services. The employer, which is covering a younger patient than the medicare beneficiary can improve outcomes for the workplace and the patient by considering the following modifications:

First, the employer might not want to use the medicare requirements of six months or less and/or giving up curative therapy. Often these are families with a variety of psychosocial and other needs and without guidance a great deal more work time is lost, not to mention worry and inefficiencies in the workplace (and quality of life for the patient!) Secondly,--and along the same lines--the insurer/emloyer may want to cover other services along with the hospice care like salvage chemotherapy, if the family choses it, TPN, epoegen and neupogen. Many hospice cannot or willnot pay for these "prolongative, or salvage" interventions. Yet the younger patient and family finds the promise of additional days worth the discomfort and expense. These families may benefit greatly from the discussion of values and may or may not change their treatment course based on better education and examination with the hospice team.

A third benefit some companies have offered is custodial care in addition to hospice. I have seen such care offered both in the home and in a skilled nursing facility or residential hospice. Because the caregiver is often the emloyee, this allows the worker to be as productive as possible, especially during a long debilitating illness when time off is not feasible.

Case management of these very ill persons can often substitute for an enhanced benefit.

Counseling, including bereavement counselling should definitely be covered particulary for children of the employee.

Monitoring quality of any health care organization is difficult. Hospice, as a newer service than many has not solved this issue as yet. There are always the standards-is the hospice licensed by the state and certified by medicare/medicaid? Is the hospice accredited? What are the patient family satisfaction scores? Unfortunately, few employers or patient/families ask these questions. Word of mouth or physicians referral are usually the methods by which patients chose a hospice.

Employers and managed care organizations help employees understand their by clearly indicating the benefit in any handbook. More important, I think is educating both the Human Resource staff and the Employee Assistance Staff about the uses and value of hospice care, because generally these employees will be consulting these professionals in the workplace.
by Gretchen Brown on May 8, 2000 02:01

Q 2 Each of the provocative questions posed in the introduction to this forum is worthy of a several volume treatise. Based on the experience of either or both hosts I am sure you have something to say about how various aspects of hospice care are both cost effective and quality promoting. So much is driven by the bottom line. Can earlier referral to hospice and better symptom management lead to the kind of outcomes payers will take notice of and eagerly pay for? What other changes are needed in the whole system to promote these goods?
by pix on May 8, 2000 11:42
A Thanks Kate for the good questions...the issue of cost is so interesting.

Historically the hospice industry has been able to lean on a small number of studies done in the past 10 years that demonstrate the obvious: if an interdisciplinary team 1) responds effectively to a dying person's distress, 2) relieves the anxieties and fears of caregivers and helps them become more competent in caregiving at home, and 3)facilitates the often complex tasks associated with life closure, then patients use emergency rooms and ICU's less often, are hospitalized fewer times and die better. (Families are so grateful they encourage their friends to philanthropically support the hospice and rarely involve hospices in litigation...two social outcomes that have not been given their due by those focused on the conventional bottom line.) The studies show that economic benefit to payers exists months prior to the patient's death, far exceeding the current median length of stay of hospice patients, which is around 20 days, with some programs reporting 7 day median LOS's! That means that, quite bluntly, Medicare and many MCO's are unnecessarily losing money under current referral patterns.

Recently, Brown University's Susan Miller, Ph.D., MBA, contributed to a Medstat Group report to DHHS on the role of hospices in nursing homes. Using large numbers of decedents from the HCFA claims database, she showed that 38% of SNF patients who died were hospitalized in the last 30 days of their life when hospice was NOT involved in their care. Their hospital stays averaged 4.2 days. In comparison, when SNF decedents received hospice care in the last 30 days of life the hospitalization rate plummeted to 1.8%. Their average stay was .14 days, that's right: point one four. Those are obviously very important figures from a cost and quality standpoint, as states currently report that 20-40% of deaths occur in nursing homes and the figure is of course expected to rise as the boomers age. (I'll make this and other data available on the Healthbond File Library in a powerpoint presentation I gave recently called Hospice 2020. Feel free to steal shamelessly, though attribution is appreciated.)

The National Hospice Work Group and the National Hospice and Palliative Care Organization recently completed an alpha pilot on some high utility measures that consumer and provider experts related to quality end of life care. One aspect of care we studied was the ability of nine hospices across the country to manage a patient's pain within 48 hours of admission. Some interesting findings: 40% of patients were admitted in pain. Within 48 hours, 64% of those patients had their pain brought to a manageable level and 60% were able to say they were comfortable. The fact that such a large number of patients live in quickly controllable pain at home prior to their hospice admission is a sad commentary on our inability to attend those who suffer and is one reason why the National Hospice Work Group pushes for earlier upstream involvement. Wouldn't it be wonderful for Americans if hospice's competencies were less intimately associated with imminent death and more freely available to patients when the need for effective palliation and good counsel arose? I think there is a treatise about why we haven't gone there, but perhaps one simple reason is that the concept of "cost" is quite narrowly limited to "cost to payer for a single economic unit, the patient." What about "cost to payer for the patient and family as the unit of care?" or "cost to the payer AS WELL AS cost to the patient and family?" (Stanford economist Ann Scitovsky has done some important work on the indirect costs that consumers with chronic and terminal illnesses must absorb.) A study on my Powerpoint presentation shows that caregivers over the age of 65 who experience emotional strain from caregiving have a 63% higher mortality risk than those who don't. This is a clear example of the need to expand the concept of "cost" as well as the availability of good palliative care. In the near future Dr. Nick Christakis at the University of Chicago intends to study differences in hospice and nonhospice caregivers' health care utilization following the death of their loved ones, using the HCFA claims database.

The most common response to hospice's satisfaction surveys across the country is: "why didn't we know about you sooner?" Important question. The palliative care movement reflects society's interest in being treated differently by their care providers. They want the benefits of hospice care without having to forego other forms of therapy, what HCFA's Dr. Jeff Kang reasonably calls "avoiding the terrible choice." Will that happen? Well, the Congressional Budget Office reports that between 2010 and 2030 the over 65 population will rise over 70% while under current law the population paying payroll taxes will rise less than 4%. When you consider the increased life expectancy that this large volume of people will bring, the enormous labor shortage that is beginning now and forecasted to go far in the future, the increased interest in unionization by health care professionals and the relative insecurity of Social Security and Medicare systems, investing in development of expanded models of palliative care is not an option. We must do it. The National Hospice Work Group and the National Hospice and Palliative Care Organization are actively seeking opportunities to engage Congress in this discussion.

by True Ryndes on May 9, 2000 08:51

Q 3 Gretchen, thanks for your very comprhensive response, but I wonder how MCOs and employers can be persuaded about a hospice benefit from an economic perspective. Saying that they "should" offer hospice care is not enough; we need some data to demonstrate cost-effectiveness, as well as customer satisfaction. Can we piece that data together, based on pasr studies? Naomi Naierman
by naomi on May 9, 2000 8:04
A Naomi, thanks for your questions. The lack of recent data about Hospice cost savings is still an issue that plagues us--and I would say a key issue to be addressed by our industry. Most of the data available is medicare data and does not directly address the privately insured population. The two Lewin studies, which were the classic studies of medicare hospice cost savings were completed in the late eighties and mid nineties and basically showed cost savings, the later showing a 25% savings. These studies of course predated any managed care for medicare.

A recent study, soon to be published for ASPE by researchers at Brown University was presented at the NHCPO conference in Nashville by researcher Susan Miller. I am reluctant to quote it given it's soon to be published status. It will be available on the ASPE web site I understand. Again, this study showed significant savings due primarily to a dramatic reduction in hospitalizations, however again the population was a medicare population. The NHO --now NHPCO's origninal managed care monograph had some of the older and perhaps some other research to help their members in contracting. I am certain, having seen some of the excellent products of your organization, that you may have something similar. Steven Connor PHD at NHPCO has research as one of his areas and keeps a clearinghouse of recent research.

I think we do better with family satisfaction data, although that also is limited. Most programs track that information, and the JCAHO programs will now use the "black box" method which assures an MCO that it is "clean." NHO and perhaps your organization publishes for programs the mean satisfaction on what is a limited set of questions answered post death by the family. I do think given the state of the art, a program could either share its own data or the national. A recent article by an author at UNC Chapel Hill studied patient satisfaction by provider type in that area and found hospice satisfaction superior.

Your project of the "report card" is one I think managed care organizations would like.

Keep your cards and letters coming!!
by Gretchen Brown on May 9, 2000

Q 4 You communicated that one of the responses in your survey is "why didn't we know about you sooner?" Any plans to improve from this feedback and what might that look like?
by tammy on May 10, 2000 8:12
A Many hospices' quality improvement, marketing and public engagement advisors wrestle with this question continually. A 1998 study by Iwashyna and Christakis reports that doctors state patients should ideally receive hospice care for three months before death, yet the reality is that most patients are receiving days or a couple of weeks of care. Dr. Julia Smith at Hospice of Rochester in New York notes that 7% of patients referred to hospices in a 1995 study died within hours of admission. (Tammy, The Medicare Hospice Benefit, which is the model for most other insurors, was created for patients with a life expectancy of 6 months or less.) When programs have median lengths of stay of 7,10 or 14 days, that means that half of their patients die within that time frame. Some possible reasons, not rank ordered:

1. Hospices are now admitting patients they didn't previously admit: 1) noncancer patients with progressive but unpredictable chronic disease, experiencing an exacerbation of acute distress and 2)patients suddenly diagnosed with rapidly advancing catastrophic illness. The latter group may have an understandably short length of time with hospice and is believed to be much smaller than the first group.

Patients and family members from group #1 benefit considerably from hospice services, but under Operation Restore Trust several years ago the feds came down hard on a number of programs whose patients achieved plateau's of stability after the acute exacerbation. What was happening? Well, one common scenario is that fatigued families of the chronically ill were often able to gain a new level of support from hospice, which meant they provided better care to their loved one, who in turn didn't follow the anticipated dying trajectory. This is excellent health care in action, but it didn't fit the feds' expectations that hospice patients die within a particular time frame. Consequently, the feds' insistance that patients satisfy very explicit, and very imperfect, prognostic criteria prior to admission has created a chilling effect on referrals. Patients in this category are them more apt to receive what Don Schumacher at the Center for Hospice and Palliative Care in Buffalo, NY, calls "brink of death, not end of life care."

2. In a study published in the BMJ this past February, Dr. Nicholas Christakis investigated doctors' (N=365) prognostic accuracy in terminally ill patients (N = 504, 65% of which had cancer, 12% AIDS, 23% other conditions). His findings: Only 20% of predictions were accurate and "the error is systematically optimistic." This means that optimism about survival may not only contribute to late referrals to hospice but an unrealistic set of messages to patients and families about appropriate course of treatment. Interestingly, a stronger doctor-patient relationship is associated with lower prognostic accuracy. How improve this? Relax the prognostic requirements for admission; have them serve as guidelines not policy. Christakis suggests that having physicians respond to a series of questions regarding probability of death over time is likely to be more accurate than conventional prognostication.

3. I also suspect that consumers want something different from their hospices in 2000 than they did in the mid to late 70's when the movement was born and in the 80's when the Medicare Hospice Benefit was created. In the past they needed a refuge from a care system that isolated and abandonned them as failures, that neglected their pain and suffering. Choosing hospice then was not a "terrible choice" as Dr. Kang has put it, it was for many the smart choice.

Today, I believe we have a different kind of consumer. People are generally more involved in their care, and believe they have the right to be aggressively treated AND have their symptoms addressed AND have their own--and families'--needs for anticipatory guidance and counsel met prior to a hospice admission. Quite reasonably, they want the benefits of palliative care as well as care directed toward prolongation of life throughout the course of their illness. Are they getting it? Without any data to backup the answer I'd venture that some are and many are not, which is why hospices must find ways to integrate their skill set with the skills of other providers. Some hospices are doing this by developing palliative care consult services and stronger connections with academic medicine.

4. Finally, evolving public perception about the meaning of hospice may be its own barrier to timely referral. As median LOS's plummet, data supports the growing truth that a hospice referral means you are about to die. While it's counterproductive, "denying hospice" may be seen as a way to forestall the inevitablity of death. I am hopeful that the National Hospice Foundation's public engagement campaign, Partnership for Caring's consumer advocacy and the excellent cyber-outreach of RWJ's Last Acts Campaign will educate the American public about the benefits of hospice (palliative) care so that the question "why didn't we know about you sooner?" simply cannot exist.

If other members of NHWG would like to respond to Tammy's question, please join the conversation. You can post your short response as a question, or if you have a long response contact her directly to find out best to do that.

by True Ryndes on May 10, 2000 11:06

Q 5 Thank you for your very thoughtful answers.

The hospice brand is known to almost every one in healthcare. But I find there is still a disconnect with hospice and the rest of healthcare. What is your assessment of this? Solution?
by Luke on May 10, 2000 8:54
A Luke, I've asked Mary Labyak, President and CEO of Hospice of the Florida
Suncoast to address your question.

First, the use of the word "Hospice" seems to infer a universal definition, model and experience of what hospice is. In actuality, the reality of what hospice encompasses is very different from community to community. Hospices begin with the minimal definition provided by law and are indeed very community based and isolated from the established health care system. Other hospices provide a very wide range of services addressing issues related to end of life and bereavement. These range from childhood education on those issues to palliative care programs and grief and bereavement centers for survivors of sudden and catastrophic deaths. Many hospices are well integrated into the health care systems, and are in fact based in such systems, have great presence there and are involved in collaborative projects to enhance end of life care for all, not only those in the transitional Hospice program. In many of these communities, Hospice is integrally woven into the very fabric of the community and a very high percent of the people who die have a hospice service at the end of their lives.

For over twenty years, the hospice movement has issued a wake-up call to the American public and American health care for the dying in our nation. Perhaps the current interest in end of life care and the emergence of palliative care are the response to that call. Is the issue that the "Hospice brand" has not been accepted and that we need to re-invent what needs to be done and how to do it? Or is it a question of who will be in the drivers seat of end of life health care and who will be counting the coins when the work is done?

That the writer seems to assume that full integration of hospice into health
care systems is the ultimate goal of hospice prompts some interesting reflection on the issue.

While hospice is a health care provider, to serve the dying and their families well, a hospice center of excellence must also incorporate the precepts of a mental health care provider, a volunteer provider, a spiritual care program, a community service organization, a community charity, a community trust and an agent of social change. While hospice concepts clearly
need to be incorporated in to all of health care, is it possible that it can better fill this broader social mission and retain this unique value construct by maintaining some separation and a bit of distance from the long established, entrenched ways of health care delivery in America as well?

Acceptance is a two way street. A death denying, death defying attitude is deeply imbedded in America medical care and our society. Is it possible that the earlier failure to embrace hospice and specializing end of life care are prime manifestations of that denial of mortality? Is it the forced confrontation of our own mortality - a deep existential acceptance that someday it will be me and those I love, not them?

Integrating hospice fully requires a picture of self not as that of health care provider, but as a terminally ill person myself with everything that may entail - diapered, drooling, demented and dependent. Is that personal picture what really makes it so difficult for all of us to integrate the miracles of curative medicine with the miracles of caring medicine?

I write to provoke some alternative thought and controversy, and look forward to responses.

by True Ryndes on May 11, 2000

Q 6 True, you recently posted a comment in the forum on end of life issues regarding a patient with a bad heart given a limited time to live and suggested hospice. I had two immediate thoughts, first- although it would not have occurred to me to suggest hospice it made complete sense, the second - if the patient knew hospice was being called in would they loose all sense of hope. Some of these type patients end up living for years although modern medicine has predicted otherwise.

I am sure these issues are nothing new. Are there any intiatives to help educate those of us in healthcare as well as the consumer? And how can you approach the use of hospice to your patients without them feeling like all hope is gone?
by Terin on May 10, 2000 8:59
A Terin, I've asked Dottie Deremo, the President of Hospice of Michigan, to address your question. She responds:

One of the key principles of hospice care is self-determined life closure. I highlight self-determination to emphasize that hospice is about helping individuals and their loved ones determine how they wish to live in the final stages of their life. Hospice assists the patient to live life to the fullest by relieving physical, emotional and spiritual suffering. This allows the patient and family to focus on what is important -- taking care of unfinished business in their personal lives, with relationships and estates. With this as the backdrop, let me answer your questions.

You asked "If the patient knew hospice was being called in, would they loose all sense of hope? How can you approach the use of hospice to your patients without them feeling like all hope is gone?"

It all depends on what one knows about a patient's awareness of their health status and their values and preferences. If, for example, a patient is approaching a point in his progressive chronic illness when he is experiencing an increase in the frequency of hospitalizations because of recurrent distress such as pain or shortness of breath, and he fears that something "bad" may suddenly happen to him and he'll end up plugged into machines in an ICU, and he is concerned about being a burden to his family, a hospice conversation may be appropriate and even welcomed. A person who prides herself on aggressively "fighting the good fight" to the end may or may not be appropriate for hospice. The two require very different approaches. This may sound heretical, but the goal is not really a hospice admission; the goal is to find a way to have the patient's and caregivers' future needs anticipated and met. Focusing on those things first may naturally lead both individuals to hospice.

We obviously can't change the course of their disease, but the referring party and hospice together can help the person with fatal illness revise what they can hope for, not take hope away. And if the person chooses to cling to the hope for reversal of his disease, as some of our patients do, it would be inhumane to remove that hope. I find that what people hope for and what they are willing to accept may be very different, and can exist simultaneously. Hoping for a miracle, or reversal of a chronic disease does not mean they are ineligble for hospice. Nor is there a requirement that people must be suffering to be admitted. Some of our patients never have pain. They simply want an experienced team of health care providers to coach them through their final days, much like Lamaze staff assist new mothers and infants. A patient once said " I just want someone beside me who's been through this a couple hundred times." Wouldn't we all?

How hospice as a service is framed to the patient and their loved ones by their physician, nurse, or discharge planner is also important. Unfortuately, hospice is often only associated with death, not living live to its fullest as I have come to know it. A "nothing more can be done" message to the patient prior to the well-intentioned hospice referral may have catastrophic results. It is grossly inaccurate for one thing. There are generally many things still to be done, so many in fact that a team of specialists (physicians, nurses, social workers, spiritual care counselors, on-call staff, home health aides, bereavement counselors and trained volunteers) are available to help the patient and the family. Another consequence of such a message of course is that people fear that they will be abandonned by their doctor, which is so contrary to good hospice care. We want the doctors that are meaningful to the patient to stay involved. They are the therapeutic intervention; they can facilitate healing when cure is not possible. How the patient's physician frames hospice care is critical. "Now is the time for special things to be done," is honest, not facile, and conveys quite a different message than the one above.

Most hospice insurance benefits are based on the Medicare Hospice Benefit, in which the patient is entitled to hospice services if their disease is life-limiting with the probability that the patient has a six month prognosis or less to live presuming the disease runs its normal course. It can be explained to patients that it is impossible to predict how their particular disease course will proceed. As a nurse, I can tell you that I have seen patients that were expected to live several years die within days and patients that were expected to die within days live several years. Each person responds in their own unique way. There are many immeasureable factors that affect life expectancy.

Some hospices have an open access policy and will accept patients who are struggling with cure versus comfort care decisions, as long as they meet the federal/state/private insurance guidelines for participation. These hospices
believe that it is their job to assist the patient and family through that complex transition process. Thus, it is not necessary for the patient to give up hope in order to be in a hospice program. This is especially important
to the parents of dying children. This territory is fraught with shades of gray Terin. It might be helpful to talk to your local hospice director about their own admission philosophy and practices.

You also asked: "Are there any initiatives to help educate those of us in healthcare as well as the consumer?

There are several national initiatives focused on education health care professionals and the consumer:

* The National Hospice and Palliative Care Organization (NHPCO) is developing a public engagement campaign to better educate consumers on these issues. NHPCO has had several press releases in the last few months and plan on an extensive campaign.

* The American Medical Association has funded the EPEC (Educating Physicians on End-of-Live Care) Program. This program trains key physicians to become the educators of their fellow physicians.

* The Robert Wood Johnson Foundation has funded an organization - Partnership in Caring - that is a consumer advocate group. The have developed an education arm, called Last Acts, who collects and distributes all of the current articles and research that is being published about end-of-life care.

* Most states have had some type of end-of-life commission which have
developed consumer awareness and health care provider initiatives.

* Many local hospices have a variety of educational efforts.

Most of the above mentioned organizations have websites that you can access for further information.

Even with all of this effort, it is clear that we have hardly made a dent in improving awareness of the value and services of hospice care. Many of us are working hard at changing the current lack of knowledge that exists. I hope this response has been helpful.
by True Ryndes on May 11, 2000

Q 7 This has been such a great forum. I am struck by a theme running through the entire discussion, especially question #4 from Tammy, the “why didn’t we know about you sooner” idea. Certainly hospice, or the idea of hospice, has a role long before “brink of death care”. There is a lot of healthcare between admission to a hospital and that brink, what else is missing? We talk about discharge planning beginning in the intensive care unit. Is there a similar way of thinking about end of life care? What should it look like it terms of education of professionals, patient and family teaching, community involvement, etc.? Undoubtedly this needs begin before admission to a healthcare facility.
by pix on May 12, 2000 10:26
A Kate, I've asked two people to respond to your question. The first, Carolyn Cassin, is a founding member of NHWG and a hospice pioneer. She is now a senior executive at VistaCare, a program that provides care to 2,400 patients a day across 15 states. The second respondent is Karen Davie, President and CEO of the National Hospice and Palliative Care Organization. Karen has the awesome task of leading a very diverse industry through whitewater times.
Thank you for your continued good questions.

by True Ryndes on May 12, 2000 04:06
A First, Carolyn responds:

As someone who has been managing a hospice for many years (before there was reimbursement), I have always thought of Hospice's most important role as helping a patient and family prepare for the last phase of life. Our role includes care at the "brink of death" but Hospice works best when it begins long before.

There are many forces that keep that from happening, as we all experience every day. Some are cultural and endemic to our society -- we just don't like to think about or plan for death. Many, though, are systemic to our existing health care, reimbursement and regulatory systems. I'm convinced that many simple modifications could be made to insure that patients and families get hospice care sooner so that they are better prepared (physically, psychologically, practically and spritually) for the end of life.

We could, for instance, change the reimbursement or regulatory incentives (or disincentives) to a hospital or doctor that did not give a patient the option of choosing hospice. The health care regulators could agree not to penalize a hospice who has a longer average length of stay but does not exceed the overall average of 6 months. Proactively, hospices themselves could integrate themselves more effectively into the healthcare system and create specialized teams that work within the hospital, nursing home or physician office to educate and support the family from diagnosis until death. Hospices could expand their services to manage a much broader range of ambivilence about cure vs. palliation. This will mean that the hospice has to develop skills and expertise in disease management most do not currently possess.

Better care and preparation for the last phase of life is within our grasp. I hope we won't all wait until our society simply matures to the point it understands that we are all going to die. I hope those of us who have experienced the worst of end of life care -- and the best -- will join together and create a system (or better yet, fix the one we have) that will give all of us the opportunity to prepare for a safe, comfortable and dignified journey through the last days of our lives.

by True Ryndes on May 12, 2000 04:06
A Next, Karen Davie responds:

The National Hospice and Palliative Care Organization foresees a world where people facing life limiting illness have all the information they need to make good decisions about their care consistent with their values and goals--A world where health professionals are all trained in the basics of palliative care, are fully aware of specialized resources for their patients including hospice, and make timely referrals--Where incentives are aligned so that the only consideration is how to deliver the best possible care that exceeds the expectations of patients and families facing the end of life. To get to this world will require major changes in our health care systems and ourselves.

Our sister organization, the National Hospice Foundation, is developing a public engagement campaign to educate the public as to why conversations about end of life care with our loved ones are needed. We are working to continue our efforts to educate health professionals to value the contributions of palliative care as much as acute care. This can be done with sound research on the benefits to patients and families of good end of life care. With partner organizations we are helping to develop curriculum for all the health disciplines in hospice and palliative care. Attitudes and beliefs are hard to change. We all have to be willing to face our own mortality and to have the courage to demand better care for ourselves and our families. Like the birthing movement, hospice and improved end of life care will be possible for all Americans if we are willing to make it so.

by True Ryndes on May 12, 2000 04:11

Q 8 This is a really good forum. Thanks. My question relates to some of the other questions regarding pre-hospice care, but it is about reimbursement. I understand that the home health industry is shifting into a prospective payment system. What effect do you think that will have on patients' access to hospice care, if any. Should hospices be having any special dialogue about this with their local home health agencies?
by jim on May 12, 2000 11:30
A Jim, I have forwarded your question to Jeannee Parker Martin, a NHWG
Affiliate in San Francisco, where she is President of a large health care
consulting firm, the Corridor Group. In the mid 80's, Jeannee pioneered the
first AIDS Hospice and Home Care program in America. She responds:

"These are great questions, and open up a much needed discussion about hospice providers and home health agencies. Thanks for your questions.

Home health agencies who are Medicare certified will shift to a new
reimbursement system on 10/1/00. This new system is the Prospective Payment System (PPS) and will drastically change the payment methodology from a "cost-based per visit" methodology to an "episode-based" payment methodology. There are many nuances to the new payment system.

This new payment system will have an effect on access to hospice care. Although home health agencies will directly drive some of the shift to hospice, hospice providers will need to take the primary role in
encouraging earlier and more discharges from home health to hospice.

Hospices have a unique opportunity now to work directly with home health agencies. Home health agencies will be looking for ways to keep their
costs down under the episode payments they will receive and will be particularly concerned about patients who are "outliers." These patients represent a financial threat to the home health agency since the payment methodology has parameters that may limit payments for providers with "outliers." For the first time, both the assessment visit completed by the nurse on admission and the acuity of the patient will actually be used to determine the initial episode payment rate. Ongoing assessments and other factors will determine the final episode payment. Therefore, home health agencies are looking for disease state management and utilization protocols to help manage costs of care provided to their patients. In addition, some home health agencies may want to discharge certain patients sooner since their episode payment is relatively fixed (again, there are nuances to the payment system that are factored into the payment).

Hospice providers have an opportunity to assist home health agencies in addressing these care and utilization management issues in several ways.

First, hospice providers should take the approach that they can help reduce cost of care delivery under some episodes of care. They should open the dialogue with home health providers by determining which types of patients the home health agency is most concerned about under PPS? Which of the new "home health resource groups" (HHRGs) are the most costly for the provider and which are most profitable for the provider? Home health agencies are trying to figure this out right now through software applications like the one we offer. It's important for hospice providers to determine where the home health agency has the biggest risk -- for example if they have many cancer patients that are high cost on their list, then the hospice provider can help with disease state management protocols or palliative care interventions. A referral to the hospice's counseling program may also be beneficial, ultimately causing the patient to elect hospice and therefore be discharged from the home health agency.

Second, hospice providers should educate home health agencies aggressively on the eligibility requiements for admission to your hospice program. One hospice provider we are familiar with has increased their admissions by nearly 50% by more aggressively educating referral sources on their eligibility requirements. This education must target the field staff nurses, social workers and rehab therapists who counsel and educate patients regularly about their options. Hospice providers also can
cross-train their hospice nurses to work on the home health team, offer palliative care interventions, and encourage earlier discharge from home health of certain patients appropriate for hospice. Hospice providers

It will be up to hospice providers to cause the most dramatic shift under PPS as many home health agencies are still unfamiliar with the eligibility requirements yet are looking for ways to control their costs under PPS.

If you are interested in talking with us more feel free to contact me via
email: jmartin@corridorgroup.com or by calling at 415/452-4383. You may
also wish to visit our web site at corridorgroup.com. Click on our PPS
button and you'll learn more about our approach to working directly with
clients and can view some of our clinical protocols.

Thanks again for your very important questions.

Jeannee Parker Martin
President
The Corridor Group, Inc.

by True Ryndes on May 12, 2000 02:44

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