NEWS

Hope Lodges: "Safe Havens" for Adult Cancer Patients, Spouses, And Other Companions

Judith Randal

With its red brick exterior, working fireplace, and other handsome appointments, Hope Lodge — a low-rise building on the Baltimore campus of the University of Maryland — could well be the faculty club. The reality is that, as one of 15 Hope Lodges now operating in the United States (see box, p. 1996), it caters strictly to a special class of out-of-town visitors.

These visitors are adult cancer patients being seen at one or another local hospital (usually, but not always an academic medical center) for outpatient care unavailable within commuting distance of their homes. As such care may span days, weeks, or occasionally, even months, the Lodges have guest rooms — each with a private bath as well as towel and linen service — for their use however long a patient may need to stay.

The rooms can also accomodate a spouse or other adult companion and, at some lodges, a third adult on a cot if need be. (Children are not allowed on the premises.) Besides sleeping quarters, the Lodges have washers and dryers for personal laundry, a kitchen where patients and caretakers can prepare snacks and meals, a dining area and van service to get patients to their medical appointments and back without having to worry about calling a taxi or finding a parking place.

Some Lodges have such further amenities as a library, a chapel, an exercise room, a recreation room, and an enclosed garden or courtyard. And all provide a variety of activities for their guests: some serious, such as question and answer sessions with oncology nurses, and some such as potluck dinners that are strictly for fun.

The Hope Lodge concept was pioneered in Toronto where the Ontario Division of the Canadian Cancer Society built the first one near the Princess Margaret Hospital in 1957. Still going strong there, it was soon followed by others in Canada that now operate in conjunction with hospitals, like the Princess Margaret, that specialize in oncology. The CCS, however, no longer runs them because they have been folded into the provincial health care system that Medicare — Canada's name for its publically-funded national health insurance program — supports.

The U.S. Lodges, by contrast, are individually managed and staffed (partly by volunteers) by regional or state divisions of the American Cancer Society, which assumes the entire cost of operating them too. Depending on the size of the Lodge and other variables, this can run from an estimated $100,000 to $500,000 a year.

No matter what their income, therefore, patients and their spouses or other companions staying at the Lodge pay nothing for the privilege. Indeed, other than there being a guest room available and a referral from the patient's treating physician — or sometimes the recommendation of a social worker or oncology nurse familiar with the case — there are no entry requirements.

What is behind this policy, which contrasts with the $45 to $70 a day asked by the few U.S. hospitals with outpatient housing arrangements and the $5 to $10 a night usually asked by the Ronald McDonald Houses for pediatric patients and their families?

Cindy Paquin, the resident manager of the Hope Lodge in Indianapolis, explained it this way. "The Lodges," she said, "exist to provide a place where adult cancer patients undergoing active treatment can focus on getting better in an environment where they and their caregivers get emotional support from others who are in the same boat. We don't have to ask people for their financial information . . . for that to happen."

A similar point was made by Kamela Robinson, Paquin's counterpart at the Baltimore Lodge, which has 26 rooms and houses some 700 patients a year with or without a caregiver. Besides being a place to stay, says Robinson, the Lodges are "safe havens" where patients can avoid the risk they face at a hotel of being stared at if they walk around without a wig or attached to an IV pole. As she put it, "the Lodges are places where patients and their companions can be themselves."



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Kamela Robinson, Baltimore Hope Lodge manager, with patient and benefactor William B. Nance.

 
Calm Assistance

They are also places that, unlike hotels, make careful provisions for medical emergencies, designating someone at all times, if need be, to call 911, or to locate the paperwork that — to help avoid treatment delays — should go with the patient to a hospital when paramedics arrive. Even in the dead of night, patients and their companions can rely on calm assistance in the event of a sudden crisis.

Like many of its counterparts elsewhere, the Baltimore Lodge has a large communal kitchen which serves as its focal point. In this particular communal kitchen, everything from floor to ceiling has been revamped, thanks to a benefactor from Florida named William B. Nance, who footed the bill.

Nance, who at 65 is a youthful looking retiree, has twice in the last decade stayed at the Lodge (the first time for 3 months running) while getting outpatient treatment for prostate cancer at Johns Hopkins, and now that he has had to return to Hopkins for still more of it, he is back. In an interview, he brushed aside his role as benefactor, but left no doubt that, in his view, the Lodge leaves little to be desired for people in his shoes.

"With everyone here having some form of cancer or here to help someone who does," he said, "there's a commonality and a camaraderie that runs through the whole place. Some die, but many recover. That's cause for celebration in itself."

Other guests, if somewhat more subdued, were just as enthusiastic. One was a woman who was fixing a meal for her 55-year-old husband, a multiple myeloma patient who was resting in their room. Before the Hagerstown, Md., couple came to the Lodge in late May, he was for many weeks an inpatient at Baltimore's University of Maryland Hospital, while she tried to keep her living expenses at a minimum.

"If it wasn't for the Lodge, my husband would still be an inpatient and I guess I would be sleeping in my vehicle on the street," she said, explaining that their move into the Lodge has made it possible for the hospital to treat him as an outpatient instead. "His medical bills are already close to $500,000 — he's had a lot of complications his insurance wouldn't cover — and we probably owe the hospital at least half of that."

At the Baltimore Lodge, there is virtually always a waiting list and the same tends to be true at many, though not all, the others.

So what happens in locales having cancer centers that cast a wide net for patients, but lack a Lodge or its equivalent for those coming great distances for prolonged periods of ambulatory care?

Dearth of Housing

The short answer is that not a great deal about the subject is known. Nor is there much doubt that a dearth of suitable housing for out-of-town patients can stand in the way of their getting the therapy they need.

Thus, Claudia Bannon of the ACS national office, where her field is patient services, said she occasionally hears of people discontinuing therapy in midstream after having had to spend nights between treatments in a hospital parking lot. And when the ACS Midwest Division decided to build a Hope Lodge in Rochester, Minn., it was largely because oncologists at the Mayo Clinic there were, with fair regularity, seeing patients who opted not to start recommended treatment because the requisite housing was beyond their means.

The Minnesota Lodge opened in May 1999, making it the newest one, and already has a waiting list for its 28 guest rooms, according to Bette Forsberg of the Minneapolis ACS office, who keeps tabs on it. It will be joined by another in Birmingham, Ala., early in 2000 and later in 2000 — probably in mid-summer — ground will be broken for one in Tampa, Fla., as well.

Meanwhile, another Lodge is under construction in Kansas City, Mo. and two more are in the planning stages in Seattle, Wash., and Marshfield, Wis., respectively. Add to that Lodges under consideration for Houston, Texas, Minneapolis, Minn., Milwaukee and Madison, Wis., and Grand Rapids and Lansing, Mich., and this would seem to be a grassroots movement that, if not yet in the mainstream, is clearly gathering steam.

A final note: When patients are at last ready to go home, many Lodges give them evaluation forms. Among the questions asked is what most upset them about their outpatient experience?

Despite the difficulties of chemotherapy, radiation, and other measures and how scary they may be to both patients and their companions, the most frequent answer is having to leave behind the emotional support that was always there for them at the Lodge.

Hope Lodge Locations



             
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