Healthy Choices

Hospice volunteers provide end-of-life companionship as more age at home

Joe Lenihan, a hospice volunteer, embraces Mary Miller while visiting her home in McKinley Park on Friday. Lenihan sees patients in both homes and in care facilities.
Joe Lenihan, a hospice volunteer, embraces Mary Miller while visiting her home in McKinley Park on Friday. Lenihan sees patients in both homes and in care facilities. jvillegas@sacbee.com

Mary Miller is full of opinions. During her weekly visits with hospice volunteer Joe Lenihan, the 88-year-old doesn’t hesitate to speak her mind – solicited or not. She’ll talk the ear off of a wrong-number caller, and she’s known affectionately around the neighborhood as “Mean Old Mom.”

“There are days when Mary is a little cantankerous – it’s not all sunshine and lollipops,” Lenihan said. “It can be a difficult time for some folks, and to share that with people is a real joy.”

Miller has been in hospice, an at-home care service provided to patients in their final days, since her congestive heart failure was deemed terminal in January. She chose the option because she wanted to remain in the McKinley Park house where she’s lived for 37 years, the past 15 without the company of her late husband, Henry.

Over the past decade, the hospice industry has seen substantial growth with the aging baby boomer population. Adults over 50 are expected to make up 20 percent of the population by 2030, and 90 percent of Americans want to grow older at home, according to a recent report by AARP, formerly the American Association of Retired Persons.

Demand for elder care, including end-of-life care, is up across the board. Personal aides and home health aides, though low on the pay scale, are the second- and third-fastest-growing occupations in the U.S., as ranked by the Bureau of Labor Statistics.

The Sacramento Hospice Consortium, a network of seven not-for-profit, Medicare-certified hospice providers in the Sacramento area, is feeling the shift in demographics. In one hospice program, the number of patients has more than doubled from 60 to 140 over the past year, which consortium coordinator Cindy Dunning attributes to the aging population.

About 10 percent of the 1,000 patients the consortium serves at a given time are over 100 years old, and many have primary caregivers in their 70s and 80s who depend on hospice volunteers for help, Dunning said. Linda Walker, Miller’s 67-year-old daughter, said having Lenihan stop by once a week affords her some personal time.

The consortium is recruiting new volunteers for a May training.

“If (patients) can be around their family and have their dog and cat with them and look out at their own gardens, that’s what most Americans consider the ideal death,” Dunning said.

Hospice care is provided by a team of visiting caregivers that includes nurses, spiritual counselors, social workers, home health aides and volunteers. The goal is not to cure patients, who must have a terminal illness and a prognosis under six months to join the program, but to make them as comfortable as possible during their final days, Dunning said.

For hospice volunteers, it’s a labor of love. Volunteers trained through the Sacramento consortium are assigned one or more patients, whom they visit for up to four hours per week, often to provide respite to a full-time caregiver. While volunteers cannot provide personal or clinical care, they are encouraged to engage the ailing patient, be it with a game, a novel or a short walk.

Lenihan, a 69-year-old retiree who became a hospice volunteer 18 months ago, said he was not present to aid his own parents at their deathbeds and wanted to provide that service to others. He had helped a handful of hospice patients before Miller, who is also his neighbor, and learned the meaning of connecting to someone at such a significant time. A former Air Force member, Lenihan regularly visits veterans.

“We had long conversations and then, boom, they’re gone – and that’s a real sense of loss,” he said. “That’s tough. That’s hard. You just talk through it, because it’s part of life.”

Volunteers undergo 24 total hours of training to learn about death and dying, care and comfort measures, psychosocial issues and communication skills. The trainings take place seven times per year – once at each of the consortium’s partner hospitals.

The consortium just about meets the demand for volunteers, with 40 percent of patients it cares for requesting the service. The rest have family members to care for them full time or don’t need the extra support, Dunning said. Medicare stipulates that 5 percent of all hospice care be provided by volunteers.

Hospice is also increasingly seen as a money saver, compared to nursing homes and other facilities. The National Aging in Place Council estimates that care can cost on average $86,000 annually per person in a nursing home, $60,000 for someone in assisted living and $23,000 for someone aging at home.

Beyond that, at-home hospice care allows for more individualization than a hospital setting, said Susan Negreen, executive director of the California Hospice and Palliative Care Association. When a patient enrolls, the hospice teams talks about what his or her final goals are, be it making amends with an estranged family member or connecting to their spirituality.

“Sometimes in a hospital, the person’s disease gets the attention instead of what it is that the patient wants,” she said. “People have different needs at end of life ... Patients want to be respected, they want to be heard. And hospice does a wonderful job with that.”

Call The Bee’s Sammy Caiola, (916) 321-1636.

Want to volunteer?

Next training times: May 1, 8, 15, 22, from 9 a.m. to 4 p.m.

Location: 1836 Sierra Gardens Drive, Suite 130, Roseville

Cost: $40 registration fee

Contact: Sacramento Hospice Consortium, 916-388-6288

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