Home is more than where you live. It is an idea that ties together the emotional, physical, and practical aspects of our lives. It is where we feel most centered, and often it is where we feel at our strongest and most loved (if those are, in fact, separate things). At times of great stress, many seek the solace of home. In fact, most people want to spend their final days at home, and doctors and loved ones agree2. Though the advent of hospitals shifted sickness and death out of the home, modern medicine is turning the tide. Increasingly, medicine allows us to anticipate death, with better screening and diagnosis, and gives the opportunity to plan for its arrival.
Hospice has revolutionized end-of-life care. Hospice is referred to as compassionate care, and it lives up to that moniker. Its mission is to provide services that maintain the comfort and control the symptoms of patients with terminal illnesses. This can include everything from medical to pastoral services for the patient, and bereavement services for family members4. Typically, hospice is provided where the patient lives (their ‘home’ may be a nursing home, etc.), with a family member acting as the primary care provider3. Hospice care allows people to meet death on their own terms.
History and current extent
Hospice has grown rapidly since its founding by volunteers in 1974. There are now more than 5,500 hospice programs, covering a wide range in size and scope. In 2012, between 1.5 and 1.6 million patients received hospice care, and approximately 1.1 million deaths occurred while in hospice3. The program’s expansion has been greatly assisted by the Medicare hospice benefit, created in 1982, which allows Medicare to pay for hospice care4; Medicare paid for 84% of hospice care received in 20123.
There are four main types of hospice care: most (97%) hospice patients receive routine home care, where a hospice worker periodically visits the home, 2.7% receive continuous home care, 0.5% receive general inpatient care (care in an inpatient facility), and 0.3% receive inpatient respite care, which is short-term care at an inpatient facility to provide respite for the caregiver3. The average length of stay for hospice patients has been steadily increasing over the past few decades, while the median stay length has decreased. An increase in the number of very long stays is driving this trend; the longest stays are so much longer than a typical stay that they skew the average stay length, making the median stay length a better estimate3,4. In 2012, the median stay was about 3 weeks (18.7 days), meaning that 50% of patients stayed for a shorter period and 50% stayed longer, while the average stay was 69.1 days3.
Contrasts in care
Hospice care is not uniform. The drivers behind the patterns in hospice care remain unclear, nevertheless there are major differences in stay length between care providers and clear trends in patient demographics. Between 2000 and 2007, the average length of the top 10% of stays increased from 115 to 183 days, but this increase was not equal across all program types. Patients receiving care from for-profit hospice programs are more likely to stay longer than those in non-profit or state-run programs. The majority of hospice programs, 63%, are for-profit3, and the percentage of hospice patients in for-profit programs is rising; it has increased from 15.8% in 2000 to 31.2% in 2007. Patients in for-profit programs are less likely to stay for a week or less and more likely to receive care for a year or more4.
Hospice patients typically fit the same general profile as nursing home patients: elderly and white. In 2012, 83.4% of hospice patients were at least 65 years old, and more than one third were at least 85 years old. Young adult and pediatric patients made up less than 1% of the patient population. The vast majority of hospice patients are white; in 2012, less than 20% of hospice patients were minorities3. Cancer is the most common illness affecting hospice patients (36.9% of patients have cancer), followed by unspecified illnesses (14.2%), dementia (12.8%), heart disease (11.2%), and lung disease (8.2%)3.
Hospice care is hard work. It is emotionally and physically demanding to care for the dying, and hospice workers are asked to tend to many patients at once. The average hospice nurse manager cares for 11 patients and the average hospice social worker cares for 273. Facing death every day can wear on caregivers; a recent study evaluated the dreams of hospice workers, and found that they were coping with work stress and fear of their own mortality1.
Despite the challenges, people not only work for hospice, they volunteer in large numbers. Volunteerism has been ingrained in hospice from its beginning, and has continued to be a critical part of the program. Medicare requires that at least 5% of patient care be done by volunteers, and in 2012, 5.4% of clinical staff hours were provided by volunteers. That is a staggering amount of work, shouldered by people giving their time out of kindness. It is humbling to consider the lengths these volunteers go to to ease the suffering of others, to help bring them home.
1. Hess, SA, S Knox, CE Hill, T Byers, & P Spangler. 2014. Exploring the dreams of hospice workers. American Journal of Hospice and Palliative Medicine, 31(4):374-379.
2. Kassam, A, J Skiadaresis, S Alexander, & J Wolfe. 2014. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Pediatric Blood Cancer, 61:859-864.
3. NHPCO’s facts and figures: Hospice care in America, 2013 edition. National Hospice and Palliative Care Organization. Web. 27 June 2014. http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf
4. Sengupta, M, E Park-Lee, R Valverde, C Caffrey, & A Jones. 2014. Trends in length of hospice care from 1996 to 2007 and the factors associated with length of hospice care in 2007: findings from the national home and hospice care surveys. American Journal of Hospice and Palliative Care, 31(4):356-364.
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