My mother recently spent 15 days in hospice care, at the end of which she drifted peacefully out of this world from the comfort of her own home, surrounded by those who loved her most. The path to the end wasn't pleasant, but there was a measure of comfort in knowing that her final days and hours were pain-free, thanks to hospice.
That period was full of contradictions for me, as her primary caregiver. I was simultaneously glad that her suffering would be managed by caring professionals, but devastated at the prospect of letting her go. Thrilled by the coverage Medicare provided, while also wishing it could do even more to ease the stress, sadness and burden. Because, even though I'd seen hospice in action over the years with ailing relatives, until it walked into my house and set up shop, I had precious little comprehension of the service, what its goals are, who's involved and how it's paid for. Although nothing can completely take away the tragedy of such an experience, knowledge (at least in my opinion) can better equip a person to power through an unthinkable time.
Most of us know enough to associate hospice with impending death. Indeed, to qualify for the Medicare hospice benefit (more on that later), a doctor must attest that the patient has approximately six months or less to live, provided that person's illness runs its course as expected. Hospice services are rarely needed for anywhere near that amount of time, however. In fact, 2014 numbers show that 35.5 percent of hospice patients died within seven days of acceptance. A scant 10.3 percent surpassed the 180-day mark [source: National Hospice and Palliative Care Organization].
Often, hospice candidates have spent months or years locked in battle with major diseases, so the shift away from trying to cure the problem can be jarring, especially for family members. That's the main gist of hospice — no more curative measures are taken. Instead, providing comfort and managing pain are the primary focuses for patients for the duration of the illness. "The goal really for both patients and families is making sure that through this very difficult transition, it's the best experience it can be for everybody involved," says John Mastrojohn, executive vice president of National Hospice and Palliative Care Organization (NHPCO).
One of the most rampant misconceptions about hospice care is that it's primarily a service for terminally ill cancer patients. This is understandable because the roots of the movement date back to 1948 when British doctor Dame Cicely Saunders presented ideas about specialized care for terminal cancer patients, then went on to open the world's first hospice center in 1967. Today, however, cancer patients make up just 36.6 percent of people served, according to a 2015 report [source: NHPCO]. The majority of patients receiving hospice have noncancer diagnoses, like dementia, heart disease, lung disease, stroke/coma, kidney disease and liver disease, among others.
Where Do You Go for Hospice, and Who Pays for It?
A prevalent hospice myth is that people who enter hospice have to go somewhere to receive care. "About 94 percent of hospice care is routine home care," Mastrojohn explains. "That surprises most people. Most think the majority of hospice care is provided in a facility."
Almost all hospice patients receive care in their own home, or a place they call home, like an assisted living facility or family member's house. Dedicated hospice facilities do exist but are used far less often. "The difference is that those are the type of patients that are more acute. Their pain or symptoms can't be well controlled in the home," Mastrojohn says.
Respite care is another infrequent, but available hospice option. "It's basically care for the patients but it's really provided as a benefit for family members," Mastrojohn explains. The demands of constant caregiving can be exhausting, so respite care is available for a short break. "This is typically provided outside the home in a licensed facility such as a nursing home, up to several days. Then the patient can go back home." People using the Medicare hospice benefit can use respite care up to five days at a time, on an occasional basis.
Hospice situations come with enough stress, so probably the most pleasant surprise to both patient and family is that hospice care usually doesn't cost a penny extra. This is due to the 1982 passage of the Medicare hospice benefit, which is the predominant payer of hospice services by a long shot. In fact, in 2014, Medicare covered costs of 85.5 percent of hospice patients [source: NHCPO].
The benefit is uniform across all states, and applies to the great majority of hospice patients, who often qualify for Medicare simply by virtue of their age. A person has to be 65 to be eligible for Medicare (although certain people can qualify earlier), and in 2014, almost 84 percent of hospice patients were age 65 or older [source: NHCPO].
Every cost is covered fully by Medicare, from pain relief and symptom control medications (other types of meds are not covered) to equipment (hospital beds, shower chairs, bedside toilets, adult diapers, bath wash) to provider services. "It's really a comprehensive benefit. Everything is paid for related to that patient's terminal illness," Mastrojohn says. However, if a patient is too young to qualify for Medicare, he or she may get hospice benefit through a Medicaid state program. "And most insurances now have a benefit that's basically structured off the hospice benefit," he notes.
The Hospice Team
Every hospice patient, once registered, is assigned an entire team of professionals. A nurse performs an initial assessment to ascertain what the patient's physical, emotional, psychosocial and spiritual state are. Using those details, a plan of care is drawn up and agreed upon by the team and patient. According to Mastrojohn of the National Hospice and Palliative Care Organization, the interdisciplinary team typically consists of the following:
Registered nurse: Generally, the nurse, who is also considered a case manager, visits once or twice a week to assess the patient, answer questions, and order prescriptions and equipment. More frequent visits will be necessary as death draws nearer, and typically a nurse or assistant is present continuously for the last day or so of life. They know the signs as death draws nearer (changes in heart rate, blood pressure, breathing), and that makes them able to know when to have an increased presence.
Hospice physician: You might never lay eyes on, or even speak to him or her, but an M.D. signs off on all treatment and medication orders made by the nurse. Think of them as the Great and Powerful Oz of hospice.
Home health aide: Visits two to three times a week to help bathe the patient and provide other hygiene assistance. The home health aide can also do light hospice-related housekeeping, like changing bedsheets.
Social worker: Advises or helps people work through complex hospice-related issues like stress, anticipatory grieving and caregiving decisions. Many hospice groups also provide post-loss grief counseling to the family, as well.
Clergy or other spiritual counselor: These professionals are optional, but available if needed to help patients and families deal with spiritual concerns.
"Frequency of visits and the types of folks that will come out really are based on the patient's condition," Mastrojohn says. "Typically, there's more service in the beginning because they're coming out and making assessments, then typically as the patient declines those services will pick up again."
Some hospice groups offer extra services, like dietician consultations, and art, music or massage therapy, as well as aromatherapy to reduce anxiety and stress associated with hospice.
Working Through the Hospice Process
Contrary to popular belief, a person doesn't necessarily require a referral to receive hospice care. However, a doctor must sign an attestation stating that the patient has an estimated six months or less to live. You also don't have to wait for your doctor to suggest hospice care for your loved one. You can bring it up to your doctor if necessary.
By electing to receive hospice benefits, patients effectively disengage from traditional insurance. "When folks say that they want to elect their Medicare hospice benefit they're saying, 'I want a treatment plan that is comfort oriented. I understand my disease is not curable. I have approximately six months or less to live,'" Mastrojohn says. You're not necessarily locked in place once you sign on the dotted line, however. The patient can unenroll from hospice at any time, for instance if a promising new therapy becomes available. "The hospice will not say you can't. The person elects and can revoke their hospice benefit."
The benefit doesn't end once the clock strikes six months, either. Patients are re-evaluated periodically to make sure that they're still hospice benefit-eligible. Occasionally, patients see improvement significant enough to warrant coming off hospice altogether. In Mastrojohn's experience as a former hospice nurse, some patients start to turn around once they're receiving the proper medication, personal care and food. Once all these services are provided through hospice care they sometimes get better," Mastrojohn says. "When they improve, and are no longer terminally ill, other plans are made for that patient in collaboration with the physician."
Another major change is that standard insurance is no longer in effect, so the hospital is not the place to go in an emergency. Instead, the hospice should be contacted directly (an emergency contact should be accessible 24 hours a day) to address pain or other issues. "They should be able to get there quickly and control it in the home or move into a facility," Mastrojohn says. So, instead of calling 911 or heading to the ER, you or your family member would call hospice. A nurse will come right to your home, no matter what time of day, to figure out the problem and take steps to eliminate the pain.
Improvements to Hospice
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/