Donna S. Zhukovsky, M.D., F.A.C.P.,
F.A.A.H.P.M.
Professor
Palliative Care and
Rehabilitation Medicine
The University of Texas MD Anderson Cancer
Center
Welcome to this third module in a series of three about palliative care. My name is Donna Zhukovsky. I am a medical oncologist by training and a palliative care physician at The University of Texas MD Anderson Cancer Center.
What we'll be looking at today are describing models of palliative care that are available in the United States; the role of palliative care throughout the disease trajectory, so from the time of diagnosis up and until the time of death and beyond for those people that do succumb to the illness. We'll identify key differences between home care and hospice and look at the role of hospice care in somewhat more detail, including a definition of hospice used in the United States, as it does vary from country to country. And we'll look at hospice admin. --- admission criteria in the US.
Okay, and in type --- in terms of the different models of palliative care in this country, we have hospital-based models, community-based models, and then hospice care, which is a community-based model of palliative care, one type.
Now, what I'd like you to see here, and this is just one model of palliative care derived from the Sheffield model, is that palliative care is not exclusively for the benefit of patients who are dying of a life-threatening illness and their families. But actually can be implemented for people with any life-threatening disease from the time of screening and investigation through diagnosis and through a variety of disease --- types of disease-directed therapies including curative therapies, life-prolonging therapies, life-maintaining therapies, and exclusively supportive therapies. And that the different types of palliative care provided, or supportive care, can include, in addition to palliative care as we have been discussing it in the past two modules of this series, rehabilitation, psychology, social work, and all the other interdisciplinary groups that we can use to support our patients and their families. The reason I pointed out that it extends --- can extend beyond death for those patients that die, is that palliative care, as emphasized previously, is not only for the patient, but for the family. So it continues on into grief and bereavement for those --- the families of those individuals that do die.
Now, the information that I have on this slide is taken from an article in JAMA back in 2002 and while some of the numbers may have changed, I think the definitions are important. So, in terms of US hospital-based models of palliative care, we have primary palliative care, secondary, and tertiary. Primary palliative care is really provided by primary physicians, be it a family practitioner, an internist; for people that have cancer, it could be the oncologist; people with dementia may be the geriatrician or the neurologist. And so, it's basic types --- basic types of palliative care, symptom assessment and man --- management, understanding the role that the different domains play to symptom expression. And it requires that that primary type physician have knowledge, attitudes, and skills. So, often we find that primary physicians, and some of these may be specialists, but the primary provider for that particular illness, that individual may not have received training in the requisite areas for the provision of primary palliative care and that there may be barriers to such in terms of attitudes or acquisition of competency. And that's been, I'm happy to say, been changing over the past several years, as these skills have been integrated into nursing, physician, physician assistant, social work curricula throughout the country. Secondary palliative care typically is provided as a consultation service. It can be in inpatient units, outpatient clinics, but it's typically more of a consultation service, so that if the primary ser --- provider is unable to provide that particular expert --- expertise, they refer out. Now, at the time this article was published in 2002, there were palliative care programs available in 6% of the 7000 surveyed hospitals and in about a quarter of teaching hospitals. I was at the Academy --- American Academy of Hospice and Palliative Medicine Annual Scientific Meeting last year and I am happy to say that those numbers have increased. And, for example, a quarter of academic centers now have palliative care programs. Now, tertiary palliative care is for the patients with the most complex care needs, so again typically assumes a referral --- or presumes --- I should say. It's by palliative care specialists --- it is provided by palliative care specialists in academic medical centers. But what makes this --- in addition --- tertiary palliative care is that in addition to the provision of clinical care in these centers, research and education is an integral component of what they do. So, this is what leads to the next generation of palliative care specialists in whichever discipline and also helps develop and support, expand the evidence base for what we do in palliative care, so again, an --- an important component of palliative care.
Now, if we would look at what's available in the community, there are outpatient visits; so, the traditional healthcare model in this country where people come back and forth to see the physician in his or her office. We can provide skilled home care through nursing services and then there are hospice care. And I'll be delineating the differences between them.
Now, traditional home care again provided by skilled nursing service. For this --- for this type of care typically the goal is that it's curative or restorative. So once the need resolves, home care's gone. So, if somebody has the need for home IV antibiotics, it's a self-limited period of time. If somebody comes home with a new tracheostomy or a new colostomy, home care may be there, but only until the family or patient learn how to provide that type of care themself. Admission criteria are such that there must be a skilled need, so it must --- so there must be a requirement for skilled nursing and that the patient be homebound. And so, for example, people who are getting home care other than to go see their physician in the outpatient office really are restricted to home. They can't go out shopping. They can't go out for tea. They can't go to the movies. Services are focused on the patient, not --- the unit of care is not the patient and family. And it's a pretty hierarchical service wherein that the visit frequency and services are determined by the medical provider. And typically this falls into a fee for service model.
Now, hospice is a concept of care. It's not a place of care. And, common --- commonly, what I'll hear is that people go to hospice. So often people mistakenly think that patients on hospice are cared for in an inpatient setting. And, in fact, by Medicare criteria, 80% of patient care provided by a given hospice in an assessment period takes place in the home setting, in the residential setting. So, it's a concept of care and not a place of care; where care is focused on quality of life for people who can no longer benefit from cur --- curative therapy, where they've exhausted those options.
It requires dual physician certification of a life expectancy of six months or less if the disease runs its anticipated course. And this is often a deal breaker, because physicians are often concerned about suggesting hospice care because, to the patient, it means they are dying. And it's a hard thing to --- to bring up. It's a hard thing to sign the hospice consent papers. But, I think, we need to emphasize here that it's if the disease runs its expected course. Because even Medicare, and the guidelines were formulated by Medicare, recognizes that clinicians don't have a crystal ball and so we're often not very accurate at certifying prognosis. So as long as there is, you know, in good faith, life expectancy of six months or less, if the disease runs its expected course. And, if the patient meets ris --- re-certification criteria and those vary at each reassessment period. And those assessment criteria --- re-certification criteria, vary depending on the hospice qualifying diagnosis. But basically, they show decline. So people can actually continue on hospice for much longer than six months as long as they meet the criteria. It does imply service with noncurative intent. And it does require primary caregiver availability. But, again, I'm pleased to say that hospices have become quite liberal in their interpretation of primary caregiver availability. As long as there's a safety plan in circumstances in which patients are no longer safe living alone. So whereas in the past, it often meant that somebody needed to be living with that patient 24/7, now if there's an appropriate backup plan, it requires access to a caregiver, but not necessarily one that lives with the patient. So, a backup plan might be moving to an assisted living facility, moving in with a --- a family or friends or perhaps going to a nursing home. And hospice care would then continue in those locations.
Now, in contrast to skilled nursing care, which is a fee-for-service program, and services are recommended by the physician, hospice is mandated to have this whole menu of services, so it requires nursing care. And the nurse is really the --- the --- plays a very primary role --- in the care here; home health attendant to help with personal care needs; physician involvement, which is somewhat less intense than in the outpatient setting; social work; chaplaincy; physical, occupational, speech therapy; dietitian; volunteer care; bereavement care for the family; medications requated --- related to the qualifying diagnosis. So, for example, if you have a patient with cancer, and they require medication for cancer-associated pain, that would be covered, but if they had hypertension before developing cancer, so unrelated to the cancer, those medications would not be picked up by cancer --- by the hospice team. But the hospice provides all medications related to the qualifying diagnosis. And they also provide durable medical equipment. So these are things that might often need to be picked up separately for somebody on home care.
Now, hospice, in contrast to home care, which is fee-for-service, is paid on a per diem basis. So, every day that hospice provider gets a flat rate no matter what care they provide. So, that per diem rate covers the nursing visit. It covers home care. It covers chaplaincy, whatever disciplines go out that particular day to see the patient. It covers all the medications related to the qualifying diagnosis, any needed equipment, etc. And it all has to come out of that flat rate. And while these are national averages, there's geographic variation, you can see that in our current healthcare climate, these aren't very high rates. So, for people on the --- the routine home care rate, which is the majority of patients, that rate is approximately $140 per day. So, you can see why, if patients were undergoing daily blood tests or perhaps diagnostic MRIs, that reimbursement would be rapidly used up and, if the pat --- if the hospice isn't fiscally conscious, they wouldn't be able to provide care of the rest of their patients. And that's why there needs to be a thoughtful approach, so that the patient receives what benefits them, but doesn't get other things that are unlikely to alter their cost and that would preclude appropriate hospice care. On the continuous home care rate, which can happen for brief periods at a time, where more intense nursing home care can be put in, so instead of the nurse coming back and forth to visit every few days or whatever is deemed to be appropriate, on continuous home care, nursing care can be put in the home on a --- up to a 24-hour basis usually for about up to three days or so at a time. The rate is about $834 a day. And, of course, that's prorated based on the number of hours the nurse is in the home. So, this is basically to tide somebody over a symptom crisis that otherwise would require inpatient management.
Inpatient respite care is provided in the hos --- general inpatient care is provided in the hospice's inpatient setting. And that location may vary depending on the particular hospice provider. Some have free-standing buildings that they use; that are their own. Others may rent space, if you will, either from a hospital or a nursing facility. So, where that location is may vary, but, in general, for people who are having a symptom crisis they can then move to the inpatient level of care and, just like for a hospital, the individual stays there until that symptom need resolves. So, it's for a self-limited period of time. You can see that rate is a little over $600 per day, the average national. And again keep in mind that 80% of the aggregate care that a hospice provides in a particular benefit period needs to be in the home setting or they're actually subject to fairly big fines. And you can see why people can't stay in the general inpatient setting indefinitely, because, by definition, less than 20% can happen not for an individual patient, but for the aggregate in the inpatient setting. Respite care is a little bit different, inpatient respite care. That's for people whose symptoms are under good control and would otherwise be in the home setting, but perhaps their caregivers are going out of town for a family wedding or what have you. So, the patient can move to the inpatient respite setting for a brief period of time. And that's reimbursed fairly similarly to the routine home care rate.
Okay, now looking at how palliative care can be integrated with traditional medical care, you can see the model that we use at The University of Texas MD Anderson Cancer Center and this is called "Simultaneous Care". So, people are seen by their primary service. For people who are outpatients, we follow them up in our outpatient clinic. When people are hospitalized, we see them as part of our consultation service whether they're in the inpatient nursing unit, emergency center, intensive care unit. For patients with more complex care needs, they may be transferred to our acute palliative care unit where we would take the primary role in their care at that point and their primary service of origin would be available to consult as needed. And then depending on their needs, they would either be discharged home where we would follow up in the outpatient clinic. They may be getting more chemotherapy or, for those patients who are no longer benefitting from chemotherapy, after discussion with the patient, family, and primary team, they may be discharged with hospice care. So, you can see that it's a very energetic process, if you will, where people can go back and forth in the different aspects of our program depending on what suits their care needs best.
Okay, so, in sum, hospital-based primary --- palliative care can be practiced at the primary, secondary, or tertiary level depending on the patient's needs and the type of expertise available in the community of that particular patient. Tertiary palliative care, in addition to treating patients with the most complex care needs, also requires the presence of research and educational programs. Educational programs not only in terms of continuing education, but, for example, fellowship programs, programs for the community --- lay community, and then the research component. Community-based options include outpatient visits, traditional home care, or hospice care. Hospice itself is a concept of care and not a location for patients with a life expectancy of six months or less, assuming the disease runs its anticipated course, patients who are no longer receiving curative therapy, and is typically provided in the home care setting. And ideally palliative care is based on simultaneous care throughout the disease trajectory, so that patients have access to the type of care that suits their needs best at that point in the disease continuum. Thank you very much for listening to me. I hope this has cleared up some areas of fogginess for you. And we'd really appreciate your feedback on this presentation, so that in future iterations we can be even more effective. Thank you.
Palliative Care: Part III video
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