Better Ways Of Living, Better Ways Of Dying
issue 169 - March 1987
Better ways of living,
better ways of dying
The treatment of AIDS poses the ultimate challenge to health care
professionals and to communities alike. The conventional approach -
in hospitals - is extremely costly and isolates the patient from friends
and relatives. There are different ways. Ed Kimble reports from
San Francisco and Ronald Labonte from Toronto.
Leaving the world with help
No other American city has felt the impact of AIDS quite like San Francisco. Since the city's first AIDS case was diagnosed in July 1981, nearly a tenth of all US AIDS cases have been reported in that California metropolis that is variously billed as 'Baghdad by the Bay', 'The Gay Mecca' and 'Everybody's Favourite City'.
In November 1986, San Francisco Health Department officials reported a record 76 deaths for one month as well as 108 new cases, bringing the city's overall AIDS tally to 2,654 cases, of whom 1,517 have died.
Of the total AIDS cases in the city, 84 per cent were homosexual or bisexual men, indicating that nearly two out of every hundred gay men there have been diagnosed with the fatal disease. Surveys suggest that as many as 65 per cent of the city's gay male populace may be infected by the AIDS virus.
Virtually every gay man in San Francisco today can name at least one friend or acquaintance who either has AIDS or has died from it. This saturation of personal awareness and grief has completely changed the social milieu of the gay community. Where cruising bars and frolicking in bath houses and sex clubs were primary activities in the late 1970s, gay men are now staying home or engaging in sports and volunteer work. Gay bars have reported business declines of 35 per cent and more, and of the 13 bath houses and sex clubs that were flourishing in 1980 only three remain open. Monitors restrict activities in those clubs to so-called safe sex practices.
The AIDS epidemic has given rise to dozens of San Francisco organizations whose ministrations to persons with AIDS are proving a model for cities worldwide. The Shanti Project is perhaps the most impressive of these. Begun in 1974 as a support service for the terminally ill, Shanti's board of directors voted to dissolve the organization in March 1982 because they were unable to obtain public or private funding and the organization was $4,000 in debt. Shanti's volunteers, led by staff volunteer co-ordinator, Jim Geary, had other ideas. A few months previously he had started what is thought to be the first support group for persons with AIDS in San Francisco.
'We met weekly at my home,' Geary recalls, 'talking about ways to deal with the early stereotypes of who develops AIDS that were promulgated by the media and the frustration of how little was known about the disease. We also processed the deaths of our friends who were among the first cases.'
Finally in February 1983, Shanti won a contract from the City and County of San Francisco to provide care for persons with AIDS. By early 1984, the demands of caring for AIDS patients would be so great that Shanti would limit its services only to persons with the disease.
Geary still serves as the executive director of The Shanti Project, but it is a vastly different program from that in 1982. This year, the programme has a budget of $1.9 million half of which is provided from city funds, the other half of which must be brought in from private contributions. Shanti has a paid staff of 40 psychologists, social workers, fundraisers, communicators, maintenance workers and administrative assistants. In mid-1983, the project added three programmes to augment the efforts of its emotional support volunteers. Volunteers now provide practical assistance such as cooking, shopping and house cleaning for persons with AIDS. The Shanti Residence Programme provides long-term, low-cost housing. And the San Francisco General Hospital Inpatient/Outpatient Counselling Services assist AIDS patients and their loved ones in coping both emotionally and logistically with the problems AIDS brings.
Shanti's emotional support programme has undoubtedly had a greater impact on San Francisco's gay community than any other single factor in the AIDS epidemic there. Shanti emotional support volunteers have become something of a quiet order of apostles for awareness of AIDS, humane treatment of persons with AIDS and changes in sexual habits that perpetuate the disease. Moreover, many organizations that have been developed to address specific AIDS-related issues have been started by former Shanti volunteers who recognized a specific need that was not being adequately addressed by existing entities. For instance, Shanti volunteers started a People With AIDS Fun Squad to organize outings, dinners and recreational activities. Another offshoot of Shanti has been the AIDS Interfaith Network, which conducts monthly ecumenical healing services for persons with AIDS and provides information and referral regarding spiritual growth resources and non-medical therapies.
More than 2,000 San Franciscans have become emotional support volunteers since 1983, and more than 300 are currently active. (Nearly 1,000 persons in other cities have also received Shanti emotional support training).
Shanti volunteers learn to confront death as a normal part of life and to place value in the moment rather than to squander emotional energy on the fear of the suffering and loss that will ultimately accompany an AIDS diagnosis. They learn to listen to clients. They learn to value the act of 'being' rather than 'doing'.
Adopting the new attitudes that Shanti training instills not only allows emotional support volunteers to work effectively with their clients, but often brings about major changes in their own lives. Sarah Finnegan, a Shanti volunteer since early 1985, says her work with the project has given her 'a joy and a thrill about my life that wasn't there before my association with Shanti. The constant contact with other volunteers and staff helps me to keep focused and to see the truth in each moment.'
These kinds of personal rewards compensate volunteers for the long hours and sometimes emotionally gruelling experiences of their work. Normally, each volunteer is assigned two clients. Clients are either persons with AIDS or their loved ones: family members, lovers or close friends. Volunteers are expected to meet at least once each week with each client and to meet once a week in supervision/support groups. The supervision/support groups consist of eight volunteers and two group leaders. In their weekly meetings they discuss their own personal reactions to meetings with clients, changes in clients' conditions (emotional or physical) and any personal issues that may affect their work on the programme.
The Shanti Residence Programme has allowed more than 120 persons a year to continue living independently. The residence programme leases and maintains 12 flats throughout San Francisco, which are capable of housing up to 47 persons at a time. Residents share common areas but each has a private bedroom, and the programme supplies any furnishings, linens and household goods that residents may not already have. A practical support volunteer is assigned to clean the common areas of each residence once a week. At the same time maintenance staff sanitize bathrooms, perform minor repairs and assist the residents with moving in.
When the residence programme began, it was in response to a sudden and surprising need among persons with AIDS - they were being fired from their jobs and kicked out of their apartments by both roommates and landlords responding with hysteria to the 'gay plague'. City and state legislation has reduced that kind of dislocation for persons with AIDS, but many find themselves out of work simply because they are too ill to function normally. Many also have had the uncomfortable experience of being shunned by roommates; as a result they seek shelter with Shanti. Most people who are officially diagnosed with AIDS are eligible for some form of welfare, but the amounts available are low, sometimes no more than $400 - $500 per month. Generally, those who have previously had full-time jobs are eligible for national Social Security disability income plus either private disability insurance or state disability income. The homeless and those with little or no work history are generally eligible for the city's own General Assistance income. Residents in Shanti houses pay a quarter of their monthly income for rent. For most that works out at $100 - $200, which is less than half of what San Francisco renters typically pay to landlords for similar accommodation.
Until January 1987, two of Shanti's residences were known as '24-hour houses,' residences where nurse assistants from the Visiting Nurses Association and its Hospice of San Francisco programme were on duty around the clock. Basically the 24-hour houses served as a residential hospice for persons in the terminal stages of AIDS infection. In January, however, Hospice of San Francisco opened a 15-bed residential facility of its own. Meanwhile, Shanti is converting its two 24-hour houses into 'independent living' residences.
Taken together, the hospice system that Shanti and Hospice of San Francisco have devised has resulted in San Francisco AIDS patients spending an average of only 12 days in hospital beds. New York, which does not yet have an efficient hospice system, records an average of 50 hospital days for each AIDS patient
Allowing persons with AIDS to remain in their homes while dying is not only less traumatic for them and their loved ones, it is also economically much less burdensome for everyone concerned. The average cost of a hospital stay in San Francisco ranges from $850 to $1,000 per day exclusive of surgery and other specialized procedures. Bill Haskell, project manager for Coming Home Hospice, estimates that the cost of maintaining an individual in a hospice is no more than $120 a day.
When Shanti Residence Number Seven was still a 24-hour house, there was a large white sheet of art paper which hung in the hallway. There visitors of those who were dying in the rooms off the hall would write messages of thanks, hope and encouragement. One of those messages seemed to capture the spirit of Shanti and its programmes particularly well. Penned in neat but defiantly bold letters, it said, 'We come into this world with help. Why shouldn't we leave it with help?' Indeed, why not.
Ed Kimble is a freelance journalist, based In San Francisco, who has written extensively about community responses to AIDS.
We stand and fight
'THE point of the Coalition is to help people with AIDS stay alive as long as they can until there is a cure. Half that battle is maintaining good mental health, encouraging an attitude of not being resigned to death.'
The emphatic speaker is 32-year-old James St James, award-winning Canadian actor and founding member of Toronto's Persons with AIDS (PWA) Coalition, 'the only group in Ontario run by and for persons with AIDS'. Vibrant, incessantly busy and in better physical shape than most, St James is also the country's longest surviving PWA (he was diagnosed three years ago), a living exemplar of his Coalition's feisty philosophy.
'Our slogan is blunt: We stand and fight,' said St James, who describes himself as 'the guy who fought AIDS and won because he wouldn't let himself die.' After four chemotherapy treatments and adjunct alternative therapies, the Kaposi's Sarcoma that struck him down is in remission and St James is back on the stage. 'My work has brought me back to life,' he says.
James Beckwith, a member of Toronto's Board of Health, agrees: 'St James and the PWA Coalition focus on a high quality, long life for people with AIDS, whereas previously most of the AIDS support work was the well-meant hand-holding that allows those with AIDS to die gracefully.'
According to St James: 'A lot of persons when they're first diagnosed with AIDS desperately want to talk with someone who already has the disease, to share the experience and the feelings that only persons with AIDS can fully appreciate.' To that end the PWA Coalition has established a phone line to hasten the development of support groups, though St James feels that the term 'support group' still sounds too institutional. 'The Coalition is just a group of friends with a problem helping each other. We want to keep it unstructured, a 'living together' fun group. We've heard enough about dying. We're concerned with living.'
So far the PWA Coalition has made contact with over 30 of Toronto's 90 persons with AIDS, and has raised enough money through personal donations to hire two full-time office workers to staff the phones, both of whom have AIDS themselves. 'We're also into job-creation for persons with AIDS,' St James joked.
Beneath his humour is a darker point. Many persons with AIDS face job loss, lower incomes, isolation and other social stresses. An important function of the PWA Coalition is to remove those strains. As St James explained, 'It's the stress that helps activate the virus. So paying the mortgage, socialising, buying the drugs, looking at mental therapies and alternative medicines are all important. If persons with AIDS need financial help with that, then we'll give it. We'll do anything we can to keep them calm and relaxed, and we'll go for anything that will keep them alive.'
The Coalition is taking its message to the streets and directly to politicians. On 31 December 1986, at the stroke of midnight, St James stood on the steps of Ontario's legislative buildings, sang 'Silent Night' in homage to those 'who have been lost so far' and, like a latter day Martin Luther, tacked a missive on the Government's front door. Its message was simple: 'Wouldn't now be a good time to help the people? Do whatever is necessary to end AIDS.'
Will this fighting spirit help St James live longer?
'Just look at me,' he. answered, adding confidently that 'I'll probably live through this thing.'
Will it work for others?
'Absolutely. And that's what the PWA Coalition is all about.'
Ronald Labonte is a communIty health advocate in Toronto.