In the last issue of MD, we introduced some basic informationabout hospice and looked at some commonly associated myths.Your responses have been very gratifying, demonstrating your deepcuriosity about the true nature of hospice. So, let’s take another stepand uncover even more.
Admission to a Medicare certified hospice program hinges on a diagnosis.That diagnosis must say that if the terminal disease runs itsnatural course, the patient has 6 months or less to live. Over the last25 years, our end–of–life prognostic ability has increased dramatically.As a result, the fastest growing segment of the hospice population iscomprised of patients with diseases that a quarter century ago werenot thought of as terminal, in and of themselves.
Fifty–six percent of hospice patients have a non–cancer diagnosis.The single largest segment of that population suffers from heart disease,accounting for 12 percent of hospice patients. However, the secondlargest category of non–cancer patients is of Debility Unspecified,followed closely by Dementia, including Alzheimer’s Disease. Together,these diagnoses represent almost 22 percent of hospice patients.Sadly, a relatively small proportion of persons dying with advanceddementia receive hospice care, suggesting that many in the health careindustry do not think of them as hospice–appropriate. Hopefully, wecan demonstrate that hospice is in fact the best option for most ofthese patients.
Alzheimer’s disease is now the fifth leading cause of death amongAmericans over the age of 65. Recent research suggests that as manyas 50 percent of Americans over the age of 85 suffer from some formof dementia. The annual mortality rate for these patients has increasedby 24 percent between 2001 and 2004. During this same period, themortality rate for heart disease, cancer and stroke has declined. Accordingto a recent article in the Journal of the American Medical Association,authored by Dr. Susan L. Mitchell, an associate professor ofmedicine at the Harvard Medical School, approximately 70 percentof Americans with dementia die in nursing homes. Because of the increasein the number of these patients being served by hospice, andour growing body of data and research, there are increasingly reliabletools for determining prognosis, and thus hospice appropriateness.However, prognostication remains particularly challenging in endstage dementia. Due to the constellation of signs and symptoms thataccompany these diseases, and their often insidious progression, theyalso present some of the most challenging ethical and moral dilemmasin medicine, related to artificial feedings via tube placement, ventilatorsupport, and “right–to–die” decisions.
The obvious questions are: What does hospice contribute to themanagement of these challenging patients? And, how early in theirdisease process should the hospice provider be consulted? First, let’sdefine our disease. Dementia refers to chronic, primary and progressivecognitive impairment of either the Alzheimer or multi–infarcttype. Although most research on prognosis in dementia is done withAlzheimer’s patients, the research suggests that the vascular (multiinfarct)dementias appear to progress to death more quickly. In a July2007 article in the Journal of Pain and Symptom Management, entitled“Hospice Care for Patients with Dementia,” the authors concludethat their findings suggest that hospice providers are able to meet theunique challenges of end–of–life care in dementia patients, and thathospice services have been shown to be beneficial for persons dyingwith dementia. They also point out that a relatively small proportion ofpersons dying with advanced dementia receive hospice care. Why?
First, there is a lack of recognition of dementia as a terminal condition.As a result, many healthcare providers do not actively monitordementia patients for signs and symptoms that suggest the conditionis progressing toward the end of life. Second, dementia patients whoreceive meticulous care can survive for long periods of time, typicallybecause they avoid the lethal complications of comorbid conditions,which often hasten death. Last, many institutional settings simply donot have the resources to assess and track the slow deterioration thatis often the hallmark of the final stages of these diseases.
In order to certify these patients for hospice care, most hospices relyon a set of identifiable criteria. First is a determination that the patientis at or beyond Stage Seven of the Functional Assessment StagingScale (FAST). The patient should demonstrate all of the followingcharacteristics:
- Unable to ambulate without assistance. This is critical, since data suggests that patients who retain the ability to ambulate independently do not die within six months
- Unable to dress without assistance
- Unable to bathe properly
- Urinary and fecal incontinence
- Unable to speak or communicate meaningfully, which is generally interpreted to mean that speech is limited to half a dozen or fewer intelligible and different words
Next is the presence of medical comorbid conditions of sufficientseverity to warrant medical treatment, within the last year, whetheror not the decision was made to treat the condition. Common comorbiditiesinclude aspiration pneumonia, upper respiratory infections,septicemia, stage III–IV decubitus ulcers, and recurrent fevers in theface of antibiotics. Last is the difficulty to swallow food or refusal toeat. Progressive weight loss of greater than 10 percent over the last sixmonths and/or serum albumin levels less than 2.5gm/dl are helpfulprognostic indicators.
Managing these patients poses huge challenges for health care providers,and can be enormously draining for families and caregivers,emotionally and financially. Hospices are uniquely qualified to assistin meeting these challenges. The provision of pharmacy, DME, andmedical supplies, included in the hospice benefit, often ease financialburdens for families. Social workers and spiritual counselors, also includedin the hospice benefit, ease the emotional burdens and oftenidentify resources that assist in a variety of ways. Hospice physiciansand nurses are intimately familiar with the progression of these insidiousdiseases, and are highly skilled in educating families and caregiversabout the challenging choices related to artificial hydration, nutrition,and respiratory management.
