coming home

Writing “Hospice Uncovered” in MD MAgazine for the last two years has given me a wonderful opportunity to introduce our followers to hospice. This year we have focused on introducing you to some of our team members, and we will continue to do that in coming issues. This month however, I decided to exercise a little editorial freedom, and offer some thoughts on healthcare reform.

All of us in healthcare have been consumed by the debate on healthcare reform. The sweeping proposals contained in both the House and Senate versions of the reform legislation have put all of us under a microscope. As a sitting member of the National Hospice and Palliative Care Organization’s Public Policy Committee, and as Chairman of the Texas New Mexico Hospice Organization’s Public Policy Committee, I have had the privilege of some front line involvement in the debate. Like every sector of healthcare, the Hospice community has worked diligently to educate Congress on the service we provide and to establish the value of our services to the healthcare consumer.

While the current legislation seems indefinitely stalled as a result of the Massachusetts election, the debate will continue. One of the things that evolved from the debate was a frank look at how we approach end of life care and the utilization of Medicare dollars at the end of life. The statistics are quite startling. Approximately one third of all Medicare dollars spent, are spent during the last year of a beneficiaries life. Of that amount, approximately one third is spent during the last month of life. In 2009, total Medicare spending was approximately 511 billion dollars. It is projected that total Medicare spending will almost double by 2018, to something in the neighborhood of 926 billion dollars. What we spend on end of life care, in the last year of life and the last month of life is staggering.

Ultimately, we have to move to an honest discussion of whether or not these dollars extend life in any meaningful way, promote a meaningful improvement in the quality of life or make a meaningful sociological or even moral contribution to our great society. This must be a delicate conversation. But, we must have the conversation.

One of our M.D. segments several months ago dealt with the subject of healthcare professionals having end of life discussions with patients. That article pointed out that there is probably no more difficult conversation in medicine, than one which touches the subject of the end of life. If that conversation is difficult in the context of the sanctity of the physician patient dialogue, imagine the challenge of our entire country engaging in the discussion.

The intensity of what we are likely to experience as we engage in the debate was foreshadowed by some of the “killing granny” rhetoric, the suggestion that healthcare would be withheld for the old and infirm. Another avenue of attack has been the suggestion that limiting the ability of anyone to access all of the tests, treatments, medications and procedures that they may want, amounts to a form of euthanasia. These profound emotions will challenge our ability to objectively discuss care at the end of life.

No generation in the history of mankind has seen more increase in knowledge than those of us who are boomers. One of the most spectacular areas of knowledge increase has come in medicine. The 1962 Nobel Prize in Medicine was awarded for the discovery of the molecular structure of D.N.A.-the double helix. When I was a biology major in college in the early 70’s, we discussed the “possibility” that the D.N.A. double helix might someday be de-coded. Today, we are contemplating unimaginable medical procedures, medications and treatments, based on our increasing ability to “engineer” D.N.A. That is just one tiny example of our explosion of knowledge.

Despite all we have learned, are learning and will learn in the future, life always has been, is, and always will be, finite. Advances in knowledge may extend life, may make the end more predictable, may make the end easier. But the end will come.

The discussion must happen. No matter what happens in the current climate of healthcare reform, no matter what happens with the current legislation, the facts are that there are limited dollars available. And, there is extreme competition for those dollars. Like it or not, we have to talk about the priority for how those dollars are spent. My hope is that we will continue to engage in a meaningful dialogue and that along the way, we will expand our knowledge of how to provide competent, compassionate and comforting care to those at the end of this grand journey.

                                                                        Dale Hicks is President of Alamo Hospice

The following is a video of Elizabeth Kubler-Ross, considered the founder of the modern hospice movement. In these clips she talks about spirituality, and how children deal with death. You’ll hear her name again and again in the conversation about end-of-life care, but she truly was a revolutionary in the way we treat the dying.

A number of people have questions about how hospice works.

What we are learning from the questions people ask is that those of us in hospice have not always done a good job of helping our referral base truly understand what hospice should provide,and how our different levels of service are accessed.

Hospice benefits were designed with the primary goal of keeping patients at homeand delivering all of their care in that setting.  However, the framers of the legislation were aware that that goal presented challenges. Subsequently, the legislation which produced the Medicare hospice benefit we have today makes the distinction between four levels of care: Routine HomeCare, Respite Care, Continuous Care and Inpatient Care. Each one is designed to meet a specific need of the patient and the patient’s caregivers. Let’s look at each one in detail:

The first level of care is Routine Home Care(RHC). This is overwhelmingly the most utilized level of hospice care. About 95 percent of all hospice days of care are RHC days. As we talk to our community about hospice, this is the level of care that most are familiar with.  It allows the terminally ill to be cared for in their home setting – where ever they define that to be. The hospice brings all of its services to the place the patient calls home. That may be a private residential setting, a nursing home or nursing facility, an assisted living residence, or a small group home.

From here, the hospice can use its entire team (pharmacy, durable medical equipment, supplies, and 24/7 response) to meet the patient’s need. Most hospice patients come onto hospice with RHC, and for most it is the only level of service they need ever receive. They eventually pass away comfortably and peacefully at home, as they wished, surrounded by family and friends, in the intimacy that only a home can provide.

The next level of care is Respite Care. Respite care is entirely unique to hospice. No other segment of Medicare provides anything similar. It’s designed primarily for the benefit of the caregiver (the person most responsible for a patient; a family member, friend or hired help usually).  It recognizes the extreme physical, emotional, psychological and spiritual challenges that accompany caring for those who are terminally ill.  Respite care allows the hospice to place the patient in a hospice in patient unit, contracted hospital or skilled nursing facility, for up to five days. The hospice team continues to manage the care, but does it in a setting where the caregiver is freed of the demands of caring for their loved one. Respite Care aids in the goal of keeping the patient comfortable and cared for, while allowing the care giver some “down time” to rest and relax.

The least used level of hospice care is Continuous Care. In some circles, particularly the skilled nursing setting, it is commonly referred to as crisis care. That’s because it is usually a patient crisis that makes it appropriate.The crisis may be unmanageable pain or symptoms that are beyond the ability of the lay caregiver to manage.

In some circumstances, though not all, active dying is accompanied by signs and symptoms that allow the utilization of continuous care. Continuous Care provides around–the–clock care by skilled staff, in those circumstances where the patient’s condition would require admission to an inpatient unit, if continuous skilled care is not provided in the home.

Last is General Inpatient Care (GIP). TheGIP level of care is a recognition that in some patients, pain or other acute or chronic symptoms simply cannot be managed in the home. The GIP level of care may be provided in a licensed hospice inpatient unit, a hospital or skilled nursing facility that meets the requirements of the hospice and the patient’s caregiver.  The GIP benefit is intended to be a short term benefit.

The four levels of care allow the hospice provider to cover every situation that may face the terminally ill patient. They maximize the goal of keeping the patient at home, allowing for respite for the caregiver when necessary and around–the-clock skilled care at home in some circumstances.  Even if an inpatient setting becomes necessary, the goals of the patient and caregiver are maintained because no matter where the patient is the hospice remains responsible for the over all professional management of the patient.

In the past five to ten years, the utilization of hospice has grown exponentially in the United States. According to statistics supplied by the National Hospice and Palliative Care Organization, in 2006, more than 1.3 million people received hospice services in the United States, a 162% increase in ten years.  These statistics clearly demonstrate that at some point, almost everyone in our healthcare community will play a role in end–of–life choices for someone. and, our aging population, including the aging baby boomers, will certainly add to the frequency with which those of us delivering healthcare are faced with these decisions and choices.

Hospice, unfortunately, has become associated with a number of misconceptions over the years. Some of these are rooted in the unique set of circumstances that gave birth to the Medicare hospice benefit in 1983. others find their genesis in misinformation, a lack of knowledge, a bad experience, or an overzealous representation of what hospice provides. dismantling these myths about the Medicare hospice benefit may be the starting point for those who are considering adding hospice to the choices available to patients facing end–of–life healthcare decisions.

The first myth we want to examine is that hospice is not a part of the healthcare continuum. It is in fact an integral part of the continuum. Medicare Part a provides the beneficiary with four treatment options: hospitalization, home health, skilled nursing facility and hospice. Medicare views hospice on an equal footing in this quartet. The hospice benefit has some unique characteristics which are designed to ensure that patients electing this benefit know how medical care, pharmaceuticals, dME, supplies and counseling services are paid for. But, the unique characteristics do not place it outside of the continuum. Rather, they simply provide an alternative to the physician faced with guiding a patient whose options are diminishing. Hospice should be viewed on the same page as every other consultant available in the physician’s arsenal to maximize the care choices for the patient. The hospice program should provide the physician with demonstrable expertise in having the hard conversation with patients and their families, explaining the hospice benefit, and guiding the patient and caregiver to understand the difference between curative and palliative approaches to their disease symptoms. Ultimately, the decision to choose hospice, like all other serious healthcare decisions, should be guided by the patient’s desires, his or her physician’s recommendations, and input from consultants and specialists.

The second misunderstanding we want to look at is that once a patient chooses hospice, he or she can no longer receive care from their primary care physician or specialist. Again, because hospice is a part of Medicare Part A, the relationship of physicians to their hospice patients is really no different from their relationship to any other patient who has been referred for specialty consultation. Diagnostic Related Group prefixes have been established by CMS for physicians seeing patients on hospice. If the physician is not an employee, contractor, or volunteer of the hospice, the physician may bill their Medicare Part B carrier for the professional and administrative services provided to a hospice patient. Professional services include cPtcode designated services, such as actual procedures, billable care plan oversight, physician consultation or interpretation of an x–Ray, ct scan, MRI and physician interpretation of a laboratory test. administrative services include participation in the establishment review and updating of the patient’s plan of care.

The last misconception that we will examine this month is that once a patient elects the hospice benefit, he or she cannot return to more traditional medical treatment. When a patient chooses hospice, they sign an election of benefits under Medicare. at any time while they are under the care of a hospice, they have the option to sign a revocation of the hospice benefit and return to more aggressive and curative treatment.

Hopefully this discussion and the ones to come will help make the case that hospice is a dedicated part of our local medical community and that hospice is a valuable and necessary resource for our community. In the meantime, feel free to contact us with any questions you have.

This is “Coming Home,” a blog supported by the people at Alamo Hospice, based in San Antonio, TX. This site acts as a forum for talking about broad issues in end-of-life care.  While the site is owned and maintained by Alamo Hospice, it’s editorial thrust is much larger in scope.

We hope you’ll check in with us regularly as we continue an insightful exploration of the complex questions and concerns surrounding healthcare in the final stages of life.