Volunteer hospice programs offer a solution to access problem

30 years later, volunteer programs are still around and succeeding

Carolyn Nystrom, RN, takes offense at the notion that volunteer hospices do not match up to their Medicare-supported counterparts. She realizes how easy it is to think that way, due to the small annual budgets, the challenge of finding volunteer nurses, chaplains, and social workers, and the absence of reimbursement. But don’t tell her that the Medicare Hospice Benefit is the only way to bring hospice care to those who need it — and certainly don’t tell her that it is better than her way.

"I would put our clinical competence up against the best Medicare hospice," says Nystrom, executive director of the Hospice of the Wood River Valley in Ketchum, ID. Nystrom should know; she used to run a Medicare hospice herself.

In fact, upon closer inspection, most hospices would like to be in the same position as Nystrom. Wood River Valley, with an average daily census of 20 patients, raises roughly $240,000 with about 60 hours of fundraising a year, with no special events needed. Volunteers provide the lion’s share of the care through 5,048 hours of services per year.

The hospice provides the complete range of care — including 24-hour nursing care, spiritual care, social worker services, and bereavement care — that would qualify for Medicare certification. Its average length of service is 85 days and median length of service is 45 days.

But the most impressive statistic reflects how well entrenched the hospice is in the expansive rural community it serves. Wood River Valley cares for 95% of those who die in the 2,400-square-mile rural area it covers. And yes, that figure includes traumatic deaths that occur from automobile accidents, heart attacks, and suicides. The hospice has been able to reach the vast majority of dying patients and their families as a result of widespread loyalty among physicians, hospitals, nursing homes, home health, and emergency personnel.

"We get calls from 911 operators to tell us when a traumatic death occurs so that we can respond and provide care to families," says Nystrom.

Nystrom acknowledges that Wood River Valley is on the extreme of the volunteer hospice spectrum, perhaps even the extreme for hospices in general, but says volunteer hospices deserve greater respect than they currently get in the industry. In fact, the hospice industry should look at the volunteer hospice model as a way to address the access problems that plague Medicare hospices.

"The volunteer model is a model for complete access to end-of-life care," Nystrom says. "I think [the hospice industry] needs to be innovative if it wants to reach people early."

Still a mystery to some

Volunteer hospices come in a variety of shapes and sizes. Depending on individual state regulations, volunteer hospices may provide typical clinical services as well as nonclinical services such as spiritual and bereavement care, says Rhoda Eagan, president of the Volunteer Hospice Network in Fredericksburg, VA, an affinity group of 150 volunteer hospices around the country.

"The magical part of volunteer hospices is that they are community-owned, meaning that they are a beloved function in most communities," Eagan says.

Their daily caseloads range from five patients per day to 100 patients per day, with budgets ranging from $10,000 to $2 million per year. Few, if any, charge their patients for the care provided.

Because of the predominance of Medicare hospices, the volunteer hospice is a mystery even to those in the hospice industry, says Eagan. The result has been a relegation to second-class status. Eagan, however, is quick to point out that the hospice movement started three decades ago when all hospices were volunteer programs. The advent of Medicare reimbursement, many experts say, has been both the best and the worst thing that has happened to the hospice industry.

"Our hospice looked at becoming a Medicare-reimbursed hospice when it first became available," says Mary Ellen Walsh, president of Fox Valley Hospice, a large volunteer hospice in Geneva, IL. "Our volunteers and board looked at it and felt that a number of people would not be served. And we have looked at it every year since."

On one hand, Medicare has provided a steady stream of reimbursement and helped bring the discipline of end-of-life care out of the shadows. On the other hand, Medicare is fraught with regulations and paperwork, both of which stifle a hospice’s ability to accept patients early in the disease process and provide optimal benefit.

Unencumbered by Medicare rules and regulations, volunteer hospices can provide care at any point in the disease process, whether or not there is a terminal diagnosis. For that reason, the day of the volunteer hospice has emerged, says Eagan.

"Medicare hospices should think about starting volunteer hospices and creating an entity that can help them care for more patients," says Walsh.

One example of a hospice forming a volunteer program can be found at the Hospice of Martin and St. Lucie in Stuart, FL. In 1999, the Hospice of Martin and St. Lucie created Transitions Pre-Hospice, a mostly volunteer-staffed program that provides free services designed to bridge the gap between the diagnoses of a potentially life-limiting illness and Medicare hospice eligibility.

"We started our program as a way for us to reach patients whose physicians have been unable to prognosticate their patients’ illnesses and to establish links to cancer centers," says Patricia Murphy, RN, MA, chief executive officer of the Hospice of Martin and St. Lucie. "It’s been very successful. Our reputation in the community has improved, and we’ve forged strong relationships with cancer centers."

Anti-kickback laws may not apply

But wait. Giving away services to potential patients — isn’t that bending federal anti-kickback laws? According to the federal Office of the Inspector General, the Hospice of Martin & St. Lucie model is within the law because it clearly delineates between the free, non-clinical services it provides and its reimbursed core services.

In 2000, the OIG granted a qualified approval of the program. The OIG said that while the hospice could allow volunteers to visit patients and not seek remuneration for the service, there was still the potential to generate prohibited remuneration under federal anti-kickback laws. While it could be construed that the hospice is offering the services in exchange for future referrals, the OIG said the hospice’s program did not subject it to sanctions because it clearly separated volunteer services from its core services. That included placing the volunteer program under the auspices of its hospice foundation, which is a separate nonprofit organization. 

The following services, which make up the program, do not overlap with the hospice’s core services:

  • friendship and visitation;
  • transportation;
  • assistance with writing and reading correspondence;
  • running errands;
  • food preparation;
  • respite care for the family or caregiver.

The program is designed to provide services to both home health patients and nursing home patients. A home service volunteer can provide all of the six services, while a nursing home volunteer is limited to providing only friendship and visitation, transportation, and assistance with writing and reading correspondence.

While there several similar "bridge" programs around the country, Hospice of Martin and St. Lucie’s Transitions program is believed to be the nation’s first and only program to have earned the OIG’s "favorable" approval.

The mission of the pre-hospice program is to provide volunteer and case management services to people with a terminal illness who have a prognosis of one year or less to live. Unlike the parent hospice, the volunteer program is allowed to provide care to patients regardless of whether they are currently undergoing treatment that might cure their diseases.

The Transitions program does not provide the core services its hospice partner provides. One paid nurse handles initial patient contact and assessment. The remainder of care is handled by a team of 75 people, each of whom donates about four hours per week.

Evaluate your hospice’s size, financial status

Whether a hospice should form a volunteer arm to reach patients who are currently ineligible for the hospice benefit depends largely on its size and financial situation, says Murphy. For example, some hospices are forging relationships with hospitals to create inpatient palliative care units as a way to reach pre-hospice patients. In fact, The hospice of Martin and St. Lucie is doing just that in addition to its volunteer program.

"It doesn’t have to be an either-or proposition," says Murphy. "The reality is that some hospices may not be able to afford doing both, or a palliative care program. If a hospice doesn’t have the resources to develop a palliative care program, the Transitions program is a good first step."

Yet, Murphy does not go so far as to say that volunteer bridge programs will be the saving grace for hospices struggling to reach patients earlier in the disease process. While volunteer programs can be cost-effective, they do require significant time and money to get started and maintain. Costs will be primarily centered on fundraising, volunteer recruitment and training, and salaries of administrative staff needed to run the organization.

"There are limitations to the volunteer model," says Murphy. "The patient often needs more than the volunteer model can handle. If there is one thing I’d like to say, it’s that our transition program is one solution to the problem."

Collaborate with other hospices

Yet another option exists for hospices interested in volunteer programs aimed at reaching hospice-ineligible patients. Walsh says Medicare hospices should collaborate with other hospices in their market to create a volunteer program that could serve them all by treating patients not yet ready to invoke their hospice benefit. While Eagan, Murphy, Nystrom, and Walsh see this as an innovative way for hospice to address one of the most perplexing problems facing Medicare hospices today, they also recall a time when volunteer hospices were innovative enough to prompt the federal government to create the Medicare Hospice benefit.

"The volunteer hospice is how we all got started," Walsh says. "Let’s not forget that."