To some people, choosing hospice can seem like giving up, which could be one reason why so many people dealing with terminal illnesses die in hospitals. (Sixty percent of Americans die in hospitals even though 80 percent say they would rather die at home [source: Stanford School of Medicine].) Hospice proponents insist that it's actually a way to take charge of the situation. "You get so much more control over your care if you choose hospice. You are a member of that care team," Mastrojohn explains.
Medication delivery has been a driving force in the expansion of hospice. "I think we have made so many advances over the last 50 years in medication and the way it's delivered," Mastrojohn says, noting that many people assume that patients are hooked up to an IV to receive pain managing medications. "The delivery mechanism (typically oral) has changed, and that's given us the opportunity to make people comfortable and do it in a very noninvasive, low cost way that's really what people want. They really want to be able to die in their own home. That would be my choice too."
Another notable recent improvement is that patients are now seen and assessed almost immediately after contact/referral is made. "When people need hospice, they need it right now," Mastrojohn says, noting that the current standard is to assess the patient the same day the referral is made, if not the next day. The sooner the care can begin, the more quickly the patient and family receive the support they need.
However, there could be improvements. In this writer's opinion, although the Medicare hospice benefit is fairly comprehensive and certainly generous, one way it could be enhanced is through the addition of night nurse/care services. Having been in the trenches, I can tell you that our care team was large and helpful, but on a typical day only present for an hour or two at a time. Many hospice patients require round-the-clock monitoring, medications and bedside assistance. Medicare doesn't typically cover the cost of a nurse to be there all day or all night, which is one reason many patients who would prefer hospice care at home end up in a skilled nursing facility, where Medicare will more likely cover the cost, at least for 100 days. [source: Barr].
This constant caregiving, in addition to other daily responsibilities, as well as the stress and sadness of dealing with a loved one's illness, can rapidly spiral out of control for the caregiver. Sleep deprivation only makes a terrible situation worse, and has been shown to cause weight gain/loss, depression and even accidents due to fatigue. For an industry that is known to show as much consideration for the family as well as the patient, this consideration seems to be a logical next step in the improvement of services.
Author's Note: How Hospice Works
Hospice is one of those concepts we think we understand until it comes knocking on our door. Although there is always room for improvement and expansion of services, I was overwhelmed by the depth of medical and emotional care that was provided to my family during the hospice period. If there's no hope left for recovery, at least there is a way to die comfortably and with dignity.
More Great Links
- American Sleep Association. "What is Sleep Deprivation?" 2017 (Feb. 17, 2017) https://www.sleepassociation.org/sleep/sleep-deprivation/
- CaringInfo. "The Hospice Team." 2017 (Feb. 18, 2017) http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3357
- Crossroads Hospice and Palliative Care. "The Crossroads Hospice ultimate gift program." 2017 (Feb. 17, 2017) https://www.crossroadshospice.com/patient-care-programs/ultimate-gifts/
- Mastrojohn, John, Telephone interview, February 15, 2017. Executive vice president, NHPCO.
- Medicare.gov. "Medicare Hospice Benefits." 2017 (Feb. 18, 2017) https://www.medicare.gov/Pubs/pdf/02154.pdf
- National Hospice and Palliative Care Organization (NHPCO). "NHPCO's Facts and Figures: Hospice Care in America." 2015 edition (Feb. 18, 2017) http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf
- NHPCO. "History of Hospice Care." 2017 (Feb. 18, 2017) http://www.nhpco.org/history-hospice-care
- NHPCO. "Medicare Hospice Conditions of Participation." 2017 (Feb. 17, 2017) http://www.nhpco.org/sites/default/files/public/regulatory/Nursing_tip_sheet.pdf
- Raymer, Mary. "The Role of Social Work in Hospice and Palliative Care." Help Starts Here. 2017 (Feb. 18, 2017) http://www.helpstartshere.org/health-and-wellness/death-and-dying/the-role-of-social-work-in-hospice-and-palliative-care.html
- Stanford University School of Medicine, "Where Do Americans Die?" (March 22, 2017) https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die/