Action-Based Care in Vancouver's DTES
by Susan Giles, RN & Evanna Brennan, RN
During the past fifteen years we have been adapting our practices to meet the challenge of a dramatically changing client base. Prior to 1995, referrals to our home care nursing service in Vancouver's Downtown Eastside (DTES) were mostly elderly and retired labourers living in the numerous single-room occupancy (SRO) hotels. While illegal drugs have always been prevalent in this area, by the mid 1990's the urban drug scene had become much more aggressive: open drug dealing and visible shooting up of heroin and cocaine in alleys and doorways had become the norm. An epidemic of drug use, fueled by low prices and easy availability swept across the city.
Those caught up in it were forced by their need and economics into DTES. This was exacerbated by the closing of Riverview Mental Hospital which resulted in an influx of people living with mental illness also being driven into the DTES by economic necessity. Old alcohol-using loggers and miners were joined by a new cohort of chaotic clients with a wide range of medical problems. Lots more drug use: IV heroin, and cocaine, smokeable crack cocaine. More recently methamphetamine has been hitting these street. This drug has always been popular in other West Coast cities such as San Francisco, Seattle and Los Angeles, but is new in Vancouver.
These clients are now often multi-diagnosed; they have history of substance use, HIV disease, Hepatitis C and/or mental illness. We originally had few skills in how to approach this population. We found our agency's protocols failed to meet the needs of these younger, drug-using people who were often in advanced stages of AIDS.
We found we were facing a population that is simultaneously desperately in need and intensely anti-social. But surviving. Medication is now available to prevent the common opportunistic infections that occur in immuno-compromised patients and anti-retroviral therapy is moderating the effects of HIV disease. These drugs have allowed HIV to become a chronic, manageable disease for many people. The medication regimens always involve a minimum of 2 different medicines and usually 3 or more. They require rigid adherence and are difficult for anyone to follow successfully over time, let alone a client who is drug addicted and must spend time each day hustling for money to fulfill drug needs. Added into this is the ever-present, often violent, disparity between the perceptions of this cohort and its surrounding populations.
Methods meant to work elsewhere do not work here. Where a casual observer may opine that none of these clients are suitable candidates for ARV therapy, experience has shown us a number of successes within an appropriately supportive framework. It is how we build and survive within this supportive framework that we want to tell you about.
As we describe our game plan and how we get thru our day, keep this in mind. What this article will try to show you is how we do it: at least some of our techniques.
Preparing this part was tricky. As anyone in nursing knows, it is easier to just do your job than describe what - worse yet, how - you do it. Over the past few years we have been attempting to get down on paper what we do. We call it Action-Based Care and even though we know just what we mean in an internal way, it has been an interesting challenge to articulate it correctly.
To the extent we have been successful, we owe much to some health-care professionals who have supported us over the years such as Sue Burgess (our outreach physician), Irene Goldstone ( BC Centre for Excellence in HIV/AIDS), and the street nurses from the Centre for Disease Control. We would not be working today without their wise contributions and guidance.
The support of CANAC has been invaluable: When we were awarded the 1999 Jill Sullivan Award for Excellence in Clinical Practice our work received much-needed validation.
So, let's get started on specifics.
Despite a lifestyle on the edge, our clients tell us they don't wish to die. Added to this is the need for many of them to maintain complex medication regimens. They have been poorly treated by people in authority, including those in the medical profession. They have learned that trust is not a good survival tactic. In an effort to become more effective for them, we developed a set of guidelines we call ABC - Action Based Care. While generally following many advanced models, especially Harm Reduction, we have strengthened the idea that the actions we take must be derived from the actual behavior of the Client rather than particular protocols.
ABC is based on a strong relationship between the Community Health Nurses and the community they serve. To build a meaningful relationship with our clients we work to develop trust. There are six important aspects:
We are going to tell you about what it's like to work and survive in DTES. We have a few tricks to show you, a few ways to make navigating through chaos a more manageable task. We want to tell you what we feel gets us through the day. Day after day, week after week. In one of the most desolate human environments we can imagine.
Wars come to an end. Civil unrest can go for a long time but it will eventually wear down. And most situations, whatever their cause, have some sort of end point. Usually there is at least the hope of a way out.
DTES is a treadmill. For the people who live in this community, there is likely no way off. If you are addicted to a smorgasbord of drugs, some bought on the street, some prescribed by this or that doctor; if you are HIV positive; if you have an alphabet soup of hepatitis viruses running through your veins; no job; no family; no hope. If you have all of this - throw in a history of mental instability while you're at it - if you have all this holding you down, you are never going to leave DTES. Never.
We know this. We have worked down there for a decade now. We know how it is. We see the same people for years. They get better. They get worse. They show signs of marked improvement. They show signs of serious self-destructive tendencies. They show no signs of leaving. And, of course, we're not going anywhere either. DTES and the growing multidx population are our client group.
If you have never worked in an area like DTES, it is hard to give you the feel for it.
It's not all bad news. If you have the proper frame of mind and are willing to endure long enough to learn the ropes, it is an amazingly rewarding experience. There is never any doubt as to whether or not they need you. They do and that's the end of it. In their moments of clarity, they will freely tell you so.
So, who is it that needs us? Who do we see in DTES? More to the point, who are people that are so different as to justify this presentation?
There are two ways of answering this. Maybe both answers are needed to do it right.
Other things weigh in here. Because they are always just on the edge, everything has massive consequences.
This is the entire living space that this Client can call 'Home', except for the small sink on the West wall. About 100 sq ft. Bathroom is down the hall. That's it.
These are true nomads. Even if they manage to live at the same address for a decent length of time, they spend their waking hours moving from point to point. The way they make the money their drug dependency demands forces them to move among customers, marks, victims, suppliers.
And then HIV comes along, with the need for unceasing visits to doctors, labs, clinics, pharmacy for ARV's, social workers... community health nurses... us.
Managing a chronic illness does not fit well with the unstable, nomadic lifestyle that is the standard here. It's inevitable that they will, sooner or later, disappoint everybody, get penalized for it. And then the care goes away.
And here comes yet another opportunistic infection. They get very ill, often as not almost die. And end up in hospital.
Where a well-meaning doctor might use the opportunity to suggest starting ARV. They agree, of course, because they almost died. At this point they will agree to almost anything.
But they come out of hospital, back into their chaotic environment and the enormous challenge of the medication schedule starts to bear down. They manage to follow a regimen - with support they will manage - for a while. But, like anything else in this bedlam, it does not last forever. Their resolve dwindles. They forget their terror when death was sitting at the foot of the hospital bed. They stop. And, since you job was to help them with the meds, now you stop. And you go away
We have learned the hard way that we must not go away. We have learned that there is a cycle to this - good for a while, off the wagon and down, then up again, then down - and, if you have to restart each time they hit bottom and come to your attention, if you have to start from scratch with them burdened with their recollection that you haven't been around lately, each cycle finds you less effective.
All our patients get a range of treatment styles. Because they are in and out of hospital, various clinics, and
doctors, they become a target for every imaginable treatment method. One hospital might specialize in quick
turnaround - get 'em back on their feet and out the door. A doctor or a clinic might have procedures that will
be followed or else...
Respect is not much of a factor in most of these approaches. And there is little understanding of what life is really like for them.
We take a different approach.
Often there's no wound, no medication present. By and large, things seem to be going along OK and you could argue that there's really nothing here for a nurse. Not right now anyway.
But there's still HIV+, the poor prognosis, and if we discharge them at this point, it means loosing the chance to further the relationship.
All too often they are released back into their chaotic world before the wound is completely healed. In a normal setting - the kind of place where you and I probably live - quick discharge makes all sorts of sense. For many of us, there is a greater risk of infection in hospital than there is back in our own homes. The resident of DTES cannot say this. Their environment is septic. Not just parts of it. All of it.
And they have other problems too. Those problems are still there, waiting for them. If you patted yourself on the back as you packed them off to hospital, if you closed their chart, hang on to your hat. In virtually every case, whatever they went to the hospital for will be back, as bad or worse than ever. And indeed, if you have closed the chart, you're not there when they fall.
You're not there when they fall.
You're not there...
It depends on how you look at you job. What are we as nurses expected to do with people like this anyway? Are we there to fix the wound and disappear, like the guy you call in to fix the fax machine, interchangeable, detached, technical. Are we there to cure the disease, administer the drugs, swab the abscess. Are we there to reduce suffering and pain, keep their spirits as strong as possible? Do you really want to make a choice from a list like this?
Least you get the wrong idea, we are never alone out there. We can and do call on a ever-growing network of other, often like-minded professionals: street nurses, Kathy Churchill, Dr. S. Burgess , hospitals, patient information services, TB outreach, Lookout Shelter, to name a few.
The paradox comes down to this: if you get too close, they will drive you crazy; if you stay too far away, you can't do them any good. Look at it in little things: take panhandling for instance.
We get asked for money all day long, some days it seems that everyone we see wants money from us. Sometime we give, sometimes we don't. How do you feel about this? If you gave as much as was asked you would soon be broke, especially since the people you pay will be back tomorrow with newer and bigger demands. But if you say no every time you are going to miss opportunities to be of real help. Sometimes the best way to reduce a person's suffering is to let lose of a quarter. Or a twenty. Other times definitely no: no dollar, no quarter, no damn dime. No.
Why give? No food equals no money equals illness. Can you really walk away, go home to a warm house and full refrigerator?
Some nurses deal with this as their code: "I never give money" or "I don't get paid enough for what I do as it is." Or "If you give once, they will expect it every time" and of course "Our money doesn't support this habit."
So: which is which? What are the rules? Are there rules?
Take some typical patient we'll call Jean. Jean has been a heroin addict for twenty years and is certainly not going to quit today. But today Jean is in real pain and refusing to take the fistful of pills that are required every morning. Jean usually is mellow enough to let you get the pills in, but biz was bad last night and Jean is a buck short for a hit. One dollar. You going to give Jean the dollar or not?
Look at the others: Rae needs twenty to get home for the holidays. You can pony up and there is a chance that the trip will happen. Or Rae can get it from the street and there is zero chance that Rae will be going anywhere. What we can do in this situation is to contact her financial aid worker to see if a bus ticket is possible. And that might work; what if it doesn't?
Here's what we do: we do business. Everything in DTES has a value. Everything is negotiable. So, you want a buck? Let us look at that leg. You want some cigarettes? OK but I won't give you any more tomorrow unless you keep your clinic appointment. You want an extra can of Ensure? Let us clean up that abscess a bit better. It may not make sense to you but to someone in DTES the sentence "I will pay you to let me save you life" is immediately understood. They do it all the time. One person pays them to get hurt, to get raped or beaten. And now another pays to fix the hurt. As long as the person pays, who cares what they do?
Regardless what we think of this attitude, we can make it work for us. Fortunately, in situations like this, they rent themselves out cheap. Simple, small incentives can go a long way. And a strange thing can happen. You do enough of these little transactions, these little bits of biz, and you start to get it. The rhythm, the tempo of it starts to be discernable. And knowing that tempo does two excellent things: you start to feel more confident - the chaos isn't quite as chaotic, and you become more effective. They work with you more, don't resist with the same obvious hostility. In short they start to trust you. And you start to trust yourself.
You need that trust. Traditionally, the burnout rate in DTES has been high. It's hard to keep slogging through so much despair. Here's our secret: two hearts are better than one. We make two-nurse visits. We work as a team. We work as a team. I don't mean in some abstract sense of all having a common mission. I mean we walk in together, we walk out together. We watch each other. We carry our cell phones, we know each other's schedule. And we know each other's limits. Always safety has to be a major concern.
More and more the logic is moving to the idea of support for each other that prevents burnout in a very stressful environment.
So we get to the point where we know we can stay sane and safe. Now what? What are the tools of the trade that will
ensure we get as much done as we can? Remember the difference between being efficient and being effective.
Let's start by talking for a moment about the two components that provide the big structures for your survival in this environment.
It's not unusual in a professional career to hit points where support from the organizational structure does not fill ones needs, may even seem hostile. Over the years that we have worked in DTES we have had this feeling more than once. In the case of the two of us it has been the case of the two of us that has gotten us through. We knew we could rely on each other. We knew that regardless of the response of the larger structure, we agreed on what we were experiencing, what was working and what wasn't. And since we were both immersed in the same environment, we were both working with the same real-world information. The fact that we both came to the same understanding was wonderful reaffirmation.