Re-examining Practice : Ethical Principles to Guide the Delivery
of Home Care Nursing to HIV+ Injection Drug Users

[a presentation by Susan Giles & Evanna Brennan]

Note: this page is the actual  script used for the talk. In the near future this document will be reworked.

[Housekeeping]

Thank you.

Thank you, audience, for finding your way back from lunch to listen to us. We will try to keep you from falling asleep.

And thank you, Canadian AIDS Society for inviting us to this conference. It is an honour for us. When we first started working together we never imagined we would be speaking to our peers in sessions such as this. The support of organizations like yours has been invaluable. It also gave us a lot more confidence to speak out for what we believe in.

Pathway with Ralf Jurge. Those of you who heard him speak this morning were treated to an informative and knowledgeable presentation. Our talk has a different format. We would like to go through our presentation first and save all questions for the end.

I hope you all have the handout package. In it you’ll also find the all-important evaluation form. Please fill it out as it will provide much-needed feedback for us. 

[Acknowledgements]

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 Care), and the street nurses from the Centre for Disease Control. We would not be standing here today without their wise contributions and guidance.

[Speaker]

Our agenda includes

[Speaker]

[Introduction]

During the past eight 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 — Canada’s poorest neighbourhood — 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 injecting of heroin and cocaine and smoking of crack 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 the Downtown Eastside. The closing of Riverview Mental Hospital exacerbated this. We saw an influx of people living with mental illness also being driven into the Downtown Eastside by economic necessity. Elderly alcohol-using loggers and miners were joined by a new cohort of chaotic clients many of whom were HIV+ and were in the palliative stage of their disease. For the last 10 years, British Columbia’s overdose death rate has averaged nearly 300+/year; most of these occurred in the Downtown Eastside.

If you have never worked in an area like Downtown Eastside, it is hard to give you the feel for it.

We’re going to show you a few scenes from a 1997 video by Robert Duncan.

[Robert Duncan video]

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 approaching this population. We found our agency's protocols did not address the needs of these young, drug-using people, often in the advanced stages of AIDS. They often "die with their boots on". Due to their drug addiction they do not have the luxury of staying home and taking care of themselves when ill.

Despite a lifestyle on the edge, our clients tell us they don’t wish to die. People in authority, including those in the health care professions, have treated them poorly. Clients were sometimes abandoned because of illegal behaviour/use of drugs. They have learned that trust is not a good survival tactic but it is imperative a trust relationship be developed to maximize our effectiveness.

[Speaker]

Preparing this talk was tricky. As everyone here 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 have come to call what we do ABC — Action-Based Care. It has been an interesting challenge to articulate it correctly. While generally following many advanced models, especially Harm Reduction, Action-Based Care strengthens the idea that the actions we take must be derived from the actual behaviour of the client rather than particular protocols. From an ethical perspective, ABC could be said to follow guidelines similar to those proposed by Peter Singer and others when describing what they call "practical ethics" as opposed to, for example, "situational ethics." While we will not attempt to describe all the details of ABC here, the approaches presented here are important parts of it.

One particular aspect of ABC, the development of a meaningful relationship with the Client, its risks and rewards, is the basis for much of what we will say today.

Action-Based Care tells us to:

[Speaker]

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 clients 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. For this population, however, many of whom have full-blown AIDS at the time of diagnosis, the time from diagnosis to death can be much shorter than average. The medication regimens are difficult for anyone to follow successfully over time, let alone a client who is drug addicted and must spend most of their 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.

[Speaker]

Today we will tell you about what it’s like to work and survive in the Downtown Eastside for us and for our clients, to spend the day walking through an ethical minefield. 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.

Downtown Eastside 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 Downtown Eastside.

Never.

[Speaker]

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. Downtown Eastside and the growing multidx population are our client group.

[Speaker]

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 Downtown Eastside? More to the point, who are these 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. We could say they are the occupants of a roughly twelve square block living room in terrible disrepair. We could say they are a group of rather individualistic nomads that spend their days and nights wandering within the tiny valley defined by those twelve blocks.

[Speaker]

Our Clients live a life of constant change. There is no commitment to anything outside the drug patterns. Nothing stays the same. Their housing changes, often monthly, or they end up on the street. They face a bewildering array of disruptions:

There are no metrics on this stuff. But you would be in the right ballpark to figure at least one such event each month. If you think about moving everything you own – everything! -- every 30 days, month after month, you can get a feel for it.

[Speaker]

Other things weigh in here. Because they are always just on the edge, everything has massive consequences.

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.

[Speaker]

And then HIV comes along, with the need for unceasing visits to doctors, labs, clinics, pharmacy for ARV’s, social workers and us, the nurses.

Managing a terminal 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.

[Speaker]

And here comes yet another opportunistic infection. They get very ill and are admitted to hospital with such things as

Often as not they almost die. While in hospital, 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 just about 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 your job was to help them with the meds, now you stop. And you go away.

[Speaker]

No! 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. Additionally, you have to remember the responsibilities you accepted by intercepting them in the first place. David Roy argues that "It is ethically wrong to set up treatment or prevention programmes in such a way that what the programme gives with one hand, it takes away with the other."

[Speaker]

One of our clients who did some presentations with us over a year ago was doing so well! It was hard to remember how close to the edge she really was. And is. She was doing so well that we kinda let her slide. We told ourselves we had other priorities and she could take care of herself. At least mentally, we closed her chart.

When she hit a rough spot with her boyfriend, we weren’t there. She did call us but we took too long to get back to her. We got back to her reasonably quick, just not quick enough. In the three days it took us to reconnect, she had fallen off the wagon and started to use drugs again after two years of being clean. Additionally, she had moved us into the ‘unreliable-like-everybody-else’ category – was in fact referring to us as "those two bitches". She is now struggling to get her addictions back under control and it’s problematic whether she can get even back to where she was. Our communication with her is extremely strained, just barely ticking along.

Years wiped out in three . . . days.

She is lost. At least for now, she is lost. We see this often on a daily basis. There are many degrees of ‘being there’ for someone. You could spend all day searching someone’s haunts for them and not visit the rest of your Clients. One ethical perspective says it is valid to leave the flock to its own devices while you find a lost sheep. Another ethic argues to maximize good and accept occasional loss.

[Speaker]

This will be hard on you. You know her expectations were unrealistic. You know you gave her all that you could. That it wasn’t enough for a moment – just a moment but a critical moment – that it wasn’t enough is not something you should feel bad about. But you’re human. You’re a nurse. You’re a professional. You want to do it right every time. It’s your job to help them heal, to keep them alive and fighting against the chains of their disease, their dependencies, their mental turmoil.

So you feel bad. You tear at yourself, search for a way to turn back the clock for her, for yourself. Well, it ain’t gonna happen. At least for the moment, she’s lost.

And here’s the thing:

You keep her chart going.

Yeah, she’s not sick in the sense that there’s a bandage to change or medication to deliver. But the disease, the big disease called Downtown Eastside has its claws into her deep and it’s only a matter of time before you see her on the hospital discharge list. Or the morgue. In her case it was a diagnosis of advanced cervical cancer.

So, you can try to help her now. Or help bury her later. And if you do help, she may reject your effort. And if she does let you back in, she may – the odds are good – crash and burn again.

And again.

And again.

[Speaker]

All our clients 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. Most hospitals 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.

We often do nothing – that’s how it seems.

[Speaker]

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 to do. Not right now anyway. But there’s still HIV and if we discharge them at this point, it means losing the chance to further the relationship. [Handout "Consequences of Not Knowing the Patient"]

Soon they will be discharged or will leave the hospital against medical advice. They go back into their chaotic world before the infection 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 Downtown Eastside 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…

[Speaker]

If the system works right, you will hear about them when they are discharged from hospital. How much effort will you make? After all, at this point, having just been discharged, they are in pretty good shape, you "assume". Why would they even want your attention? Ordinary people wouldn’t.

[Speaker]

These are not ordinary people. Their understanding of their terminal disease status is limited due to their preoccupation with obtaining drugs to stave off withdrawal. Regardless what you think, if you do nothing you will be seen as "all the others" who have given up on them and gone away. That’s how this population sees it. The rest of the clients, the more stable population, see it as "I don’t need the nurse any longer, great." But the folk we are talking about here see their relationship with you differently. They see it as permanent. Or at least they want the relationship to be permanent.

[Speaker]

It depends on how you look at your 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 monitor 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?

[Speaker]

If you want to avoid being caught in one ethical dilemma after another, you must understand how you are seen. First, you are not treated with indifference. Almost everything you say and do has an exaggerated impact on the client’s response. It is easy to see this as some sort of friendship – the kind you might have with your neighbors or coworkers. It’s not.

[Speaker]

Think of yourself as a car. Or a computer. Think about how you feel about your car. You depend on it, you need to know it will be there when situations demand it. Of course, it’s most clearly valuable to you when you really, really need it.

Now consider how you would feel about your car if it was only around in emergencies. The rest of the time, it just disappears. And it doesn’t reappear until you are in crisis. I suspect you’d be looking for a new car. Or computer, or TV, refrigerator – you get the idea.

That what we are: an appliance. A very useful, often clever… appliance. And like any good appliance, you’re always around. Not just when disaster hits, but in ordinary times too. So that they can see you. That you will be there when they need you. When they decide they need you.

Otherwise, you will arrive too late. They want an appliance that will keep them out of a mess in the first place, something that will dish out the right ‘ounce of prevention’ so that they don’t get once again pounded by the cure. Care delivery by crisis almost guarantees the second situation will be worse than the first, the third worse than the second. The client will degenerate into ‘noncompliant’, ‘uncommunicative’, ’erratic’, even ‘hostile’. What went wrong?

[Speaker]

Lest 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; Dr. Sue Burgess, outreach physician and TB outreach, to name a few.

The ethical 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. Talk about practical ethics!

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 loose of a quarter. Or a twenty. Other times definitely no: no dollar, no quarter, no damn dime. No.

[Speaker]

Some people deal with this using a personal code of: "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 ethical rules at play here?

Are there rules?

[Speaker]

Take some typical client 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’ve got the pills. She needs the pills to survive. But she won’t take them until she settles down. And she needs a dollar to get the heroin that will let her relax enough to take the pills.

So… Are you going to give Jean the dollar or not?

[Speaker]

Here’s what we do: we do business. Everything in Downtown Eastside has a value. Everything is negotiable. So, you want a buck? Let us look at that leg. You want some cigarettes? OK but there will be none 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 the people in this room but to someone in Downtown Eastside the sentence "I will pay you to let me save your 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.

[Speaker]

You need that trust. Traditionally, the burnout rate for working in Downtown Eastside 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.

[Speaker]

There is an element of danger. In fact there is usually the very direct possibility of danger. It is the environment itself that is dangerous. There are ways that we use to keep the risk low. Notice I didn’t say we lower the level of danger. This is a dangerous place and that’s that. But we do know how to keep down the risks we take.

Our personal comfort levels are high because we have worked in this environment for many years. We can "read the street". We feel less threatened by crowds of people selling drugs and shooting up on corners and in doorways and alleys. We are aware of the street scene as a lifestyle. And, like any lifestyle, underneath the obvious chaos, there is a logic, a set of rules these folks use to get through their day.

We cannot forget that we are on the street and need to be aware of sudden changes in the social temperature. There is always the possibility of violence: fights, noises of anger or breaking glass. We have to be ready to get out of any place quickly. Never take the calm for granted.

[Speaker]

As you become more comfortable in the chaotic environment, you will be able to expand your personal safety zone and trust your own judgment. Greet people as you pass them in hotel corridors. Residents here have a generally positive perception of nurses.

There are things we learn. We don’t get into a hotel elevator if we feel uncomfortable. We walk quickly, make little eye contact. This just boils down to another aspect of respect for the people living here, their rules – conventions, if you like, their customs – say this is the way ‘normal’ people here behave. React politely at open doors. Don’t stare on the streets or act too inquisitive since this makes them uncomfortable.

[Speaker]

This is, strangely enough, a private world. They are shooting up in the street because they have no place else to use. This is their home. They can’t stop you from walking through their living room because it’s public property. It’s not wise to escalate the situation with bad manners.

[Speaker]

Think in terms of pre-emptive de-escalation. Lie low if a fight breaks out in a hallway. Don’t speak unless addressed directly. Many of the same people who will speak easily with us in their room will ignore us on the street. Likewise, don’t bother being offended by this; you’re wasting your energy. It’s like going to Calcutta and being annoyed by all the people who don’t speak English.

Our presence on the street can be seen as invading their ‘biz’ territory. Act accordingly. But don’t delude yourself into thinking "When in Rome, do as the Romans do." You don’t have a clue what these Romans do, so don’t try to fake it. You are lying, they know it and resent it. Don’t crash their party when you’re there to serve the drinks.

[Speaker]

There is another ethical component that can be easily overlooked: you are obligated to survive. If you succumb to the chaos or run from it, you are no longer of use.

More and more the logic is moving to the idea that paired support for each other helps prevent burnout in a very stressful environment.

[Speaker]

Let’s start by talking for a moment about the two components that provide the big structures for your survival in this environment. The first is how you feel about yourself: your personal perception of your physical, psychological and spiritual self. Do you know why you’re there? The second is how well your coworkers resonate with the philosophy necessary to make a difference in this environment. You all have to be working from the same page.

[Speaker]

You have to understand your client’s page, as well. But this can be uncomfortable.

Easing up on judgment of the person can help you make good decisions. Your view of the person isn’t obscured by foggy layers of opinion.

[Speaker]

Take Fred for example.

Fred has advanced HIV disease - full-blown AIDS with MAC, herpes zoster, esophageal candidiasis, early CMV retinitis, CD4 10, V.L. 750,000. He refuses ARV’s.

Fred punches every button with nurses and outreach doctors. Has a history of abuse ++ and unattractive survival skills. Rude and unappreciative and often seems to deliberately punch buttons. Borderline personality behavior. No please/thank you, a demand not a question. Always someone else’s fault. The system is wrong no matter what.

Many healthcare professionals would discharge him from their work load as too difficult and abusive. And yet he did ask us one day, "What time will you be back tomorrow?" He is end-stage AIDS.

But, Fred manages to get out daily to score his drugs. This is basic survival for him. He treats his pain and staves off withdrawal on the street. He needs his prophylactic and analgesic medication daily.

[Speaker]

Wait a minute. He goes out everyday. Then why do we need to visit him every day? He can pick up his pills at the pharmacy. We can tie his pain pills to his prophylactic medication at the pharmacy and they can give it to him daily and we don’t need to visit.

[Speaker]

Ah… except his pain pills don’t do it for him. They never did. They are not enough. This translates into irregular pharmacy visits. No steady intake of prophylactic medications, less contact with health care providers to monitor his status which leads to frequent illnesses. You are NOT going to be there when he falls. Because of his challenging behaviour, it would be easy to justify discharging him from the caseload.

But despite his behaviour we must not lose sight of the fact that he is dying of AIDS. We have an ethical obligation to provide accessible care to him and it is his absolute right to receive it.

[Speaker]

You need to understand both the potential you have to make a difference and, at the same time, the limitations imposed upon you by

You can make a difference. You will not save the world. Remember, it is on your clients’ terms, not yours.

[Speaker]

It’s not unusual in a professional career to hit points where your organization’s understanding of a situation is at odds with the front line workers’ understanding of the situation. This can lead to conflict. Over the years we have worked in the Downtown Eastside our team has had this feeling more than once.

For example, our agency frowns on transporting anyone in their car. One of our clients, Larry, desperately needed a biopsy of his infected wrist. Chances are he would lose his hand without this diagnostic procedure and appropriate treatment. Arrangements were made to taxi him to his appointment. We visited him on the appointed day, only to find him passed out in his closet. What now? There’s no way a cab driver would take him now! We ended up maneuvering him into our car and driving him to St. Paul’s Hospital ourselves. As he was so loaded, he didn’t even need the anesthetic. Had we not overstepped our agency’s boundaries he never would have gotten there. As it was, Larry lived to tell another tale.

[Speaker]

Oftentimes, it has been team support that has gotten us through. We knew we could rely on each other. We knew that regardless of the response of the larger structure, the frontline team agreed on what we were experiencing, what was working and what wasn’t. And since we were immersed in the same environment, we were working with the same real-world information. That we came to the same understanding was reassuring.

[Speaker]

Our team is like-minded. The fact that we have different perceptions of what we experience in Downtown Eastside is a bonus. Each of us forgives the other for their "blind spots" [sort of]. In fact, it is this very spread of perceptions that allows us to argue that two-nurse visits will provide far better client care more effectively that single nurse visits in such an environment. We know our clients. One of us being off for a day does not affect the quality of care the client receives.

[Speaker]

Physical space in the hotels is limited. It’s often difficult to open the client’s door wide enough to get into the room, especially if it’s loaded up with the client’s possessions. Of course, the opposite extreme has its own problems: no towels, no sheets on beds and client lying in filth. We end up working closely – physically close – one nurse setting up dressing tray, supplies. The other nurse is doing actual care. One nurse is assessing the immediate environment – food, fridge, heat and water – or is on the phone setting up appointments. With this kind of teaming, we get in and get out. The client doesn’t have time to get wound up about our presence: another plus.

[Speaker]

The places people live can get to a nurse visiting by herself. This is an overwhelming environment. The smells are truly overpowering. BO, garbage, old clothes and rotting food, mice and cockroaches (our favorite!). And often another person is passed out in some corner of the room or on the bed. This can add up to tremendous anxiety for a nurse alone.

The client can be calling out swear words and verbal abuse. "Come back later", "I’m not ready yet" are the mildest we hear.

If your attitude is "My time is so valuable, I can’t be wasting it waiting for you", your justification is "It’s ok. He made a choice to stay up all night doing drugs so I choose not to waste my time with him."

[Speaker]

We look at it differently.

Take John for instance. He is often so stoned or exhausted after a several days drug binge that it can take twenty minutes to get him ready for a dressing change. We must wake him up, get his shirt off to do the dressing. As incapacitated as he is, he usually resents our helping him with such simple tasks. He would certainly get angry if we went away and didn’t do the care he needs and the next visit would be even more difficult. So we stand there and wait for him in his 8 x 8 room. For a nurse alone, this situation would be anxiety-producing. For two, it is just the task at hand.

[Speaker]

This way of doing business has some powerful benefits:

All of this leads to improvements in both effectiveness and efficiency. More often if we start the therapy off right in the first place, there would seem to be a good chance that the client is going to be more accepting of us and may comply more readily. And, in the Downtown Eastside, compliance is worth its weight in gold.

[Speaker]

So you want compliance? It starts with respect.

We have been asked: are we arguing for respect for the rights of the client? Or the lifestyle? The ability of the client to endure? Does our idea of respect imply endorsement?

We would like to have a clever answer to this. Some turn of phrase that would sum up our meaning of the word respect. So far, no luck.

Does it mean respect for the rights of the client? Yes, of course. Absolutely. Each of the residents of Downtown Eastside are residents of all the larger communities as well. Vancouver, BC, Canada. As residents of these communities, they have every reason to expect the services to which any resident is entitled.

[Speaker]

This is not a question of compassionate care. Sympathy does not have to come into play. If these folks lived in a tonier neighbourhood, we wouldn’t even have to make the point. A drug addict in a million-dollar home will get our services delivered in exactly the manner requested. While there are obvious differences between that well-off user of our services and the client in Downtown Eastside, those differences do not – or at least on paper should not – enter into our equation. The respect, then, is not some feel-good respect for the sensitive soul that lies within us all or some such. The respect is that due the office. In this case, the office of resident of Canada and BC and Vancouver. Period. All other factors: what you and I think of the person or the behavior of that person, has nothing to do with it. Residency equals service.

[Speaker]

No value judgment need come into play here. But, for the sake of ethical clarity, ask yourself who is a more appropriate client for our services, the multidx-shattered body and spirit of Downtown Eastside or the mansioned millionaires who expect and receive – as is their right – free, nonjudgmental services.

So, that’s part one of respect: nonjudgmental care.

[Speaker]

It’s easy for us to say it that absolutely. And we expect most of you will agree without giving it much thought. In a few minutes we’ll get to the details of watching as a person destroys himself and your efforts time and time again. Respect for the person, respect for the position, respect for your abilities, respect for any aspect of the situation, will be hard-tested.

In the meantime, consider the idea of respect for the circumstances. For "being there, where they are."

[Speaker]

This is not how we are trained. We are trained to "fix it". To deal with the problem right "now". That’s what you are trained for, that’s what you’re here for, right? Ethical considerations are not part of the picture, beyond those dictated by professionalism. You know the problem, know the solution and you’re standing in the hall, knocking on the door. If they are not ready for you when you get there, they are labeled "not interested", "busy", "non-compliant" or "high". In most communities, this equals "services not required." Since other communities usually have alternate resources with which to address the problem, there is no absolute risk in you simply writing them off.

Here, there are more subtle situations afoot. You have to understand that the concept of personal health is lower on their priority totem pole.

[Speaker]

You will know by the second "fuck off!’ that it’s "no" for today.

Weather it.

It’s important to persist, even if it means another rescheduled visit. You have to know that your services are ultimately important – this is where that self respect is so important.

[Speaker]

One of the hardest things about trying to be non-judgmental is remembering to include yourself, your own actions and decisions. Action Based Care applies to you, too. So think things over, try to be flexible and creative in planning your next visit. There’s more than one way to skin a cat. Think over what you did, decide whether the action worked and decide on how you will handle it next time. Make notes, discuss it with your partner to develop a different approach for next time. And let it go. You have to remember, other priorities are currently in first place for your client: maybe they’re getting evicted in two hours, or a close friend has just overdosed, etc. so understand you are not a priority. Don’t let it get to you, don’t let it turn you off. So today’s schedule is now tomorrow’s. So what?

Maybe tomorrow the priorities will be different. By the way, this is yet another advantage to two-nurse visits; it’s unlikely you will both be equally frustrated by the rebuff. Second brain, second look: it’s important.

We are saying that the nurse must not judge, but the client continues to judge the nurse and the system. The nurse is caught in the middle of prejudices from client and the care structure. Take the myth that the nurse knows all, is problem oriented, and will "solve" the problem and eventually discharge will happen. And you’re out of there!

[Speaker]

Wait! You should know by now the importance of maintaining a continuing relationship with the client.

For the people of the Downtown Eastside the pain is chronic. The disease is chronic. The drug addiction is chronic. Downtown Eastside itself is chronic. Downtown Eastside wherever it may be. Life in Downtown Eastside, life like this… is chronic.

We have always said and believe that getting away from this environment is The Answer. However, here is Mary’s story.

[Speaker]

[Mary]

Mary grew up in a suburb of Vancouver. We can never know for sure, but we think her childhood was in the range most of us would call normal. Up to a point.

When we first met she was 36. She had 2 children: a 21-year-old son who was being raised by his father in Alberta and maintained no contact with Mary, and a 17-year-old daughter being raised initially by Mary’s mom (and since last year by Mary’s sister).

[Speaker]

That was four years ago. At that time she had a 25 year history of heavy IV drug use - heroin, cocaine and crack plus poly pharmacy. She was a smoker, asthmatic and had a history of depression. She had been HIV+ for 3 years. Our referral was to assist Mary with her ARV regimen.

At first admission she was living in Downtown Eastside with her boyfriend, Rick. He was also HIV+ and a heavy drug user. Their relationship was difficult. Rick was verbally and mentally abusive to her and often disappeared with her money for days at a time on a drug binge.

As I said, our referral was to assist Mary with her ARV regimen. We weren’t successful. Mary was often not home. When she was home she was often using drugs and if she was using she would not allow a visit. She was embarrassed because we would see she had missed her pills. Of course, since we couldn’t get to her to help her take them, she didn’t. We kept at it, as there is always hope in these situations.

Eventually, she and Rick had a falling out and he moved to another hotel. This left her more or less by herself and she told us she was not good at living alone. She did have her buddies in Downtown Eastside and did socialize well with her local friends. They were likely all she had. As we found out later, she didn’t relate well to her own family, especially her father. He didn’t understand or accept her battle with addictive behavior.

[Speaker]

Then, a year ago, she had a lengthy hospital admission with necrotizing fascitis and MRSA pneumonia. Miraculously, she survived. After a long ICU stay and an even longer stay on a medical ward, she was discharged from hospital much weakened, had lost 30 pounds. She could not return to the Downtown Eastside. Her family decided she could go to their suburban home to recuperate. That proved to be a strain for both Mary and her parents. She felt an outsider. Her father would not allow her to help out in the house. She became very depressed.

Possibly the family conflict augmented her growing depression. At any rate, the day came when she overdosed on methadone, Valium and T3’s. When she came out of her fog, she found she had been readmitted to hospital. Her GP told her she had lost confidence in Mary’s ability to manage her medications unless dispensed daily by the pharmacy. She had gotten used to picking up her methadone and medications every three days and considered the daily humiliation of a trip to the pharmacy as another obstacle to self-respect. Nonetheless, that was the condition when she was released from the hospital.

Released back into Downtown Eastside. Back into the drugs and violence she was fighting against. Fighting against and failing.

She knew she could not break out of her drug dependency as long as she stayed in Downtown Eastside. She found another woman who wanted to move from the area and they went looking for an apartment. They found a one bedroom unit in a better part of town that their pooled welfare could just afford and they settled in.

[Speaker]

Unfortunately, the roommate brought her drug consumption along for the ride. This was the very aspect of life in Downtown Eastside that Mary had been running from. With no other social contacts in the new area, she accepted the reality of renting a studio apartment by herself. Not only did she not like being alone, the $550 cost of the apartment consumed most of her monthly cheque, leaving her about $6 a day for food and other expenses.

Now she was away from the drugs, at least on a daily social basis, but she was broke, alone and bored.

She could have solved a lot of this with a return to working the streets. The money would have eased at least some of the pressures. But it would have moved her inevitably closer to the drug scene, so she kept her balance and did the best she could to distract herself.

She understood her situation well. She was broke, lonely, desperate for contact with her daughter, fighting her chronic depressive bouts and staying as clean as she could. She told us her life had "good stress - bad stress". Good stress was that she was in a position to be dealing with her daughter and family more. Bad stress was dealing with her own demons. But even the good stress was very wearing on her. For years she had avoided this and now the expectations were different.

And her daughter. Although nowhere near as often as she would have wanted, the infrequent visits of her daughter became her anchor point. They became the reason she continued to struggle to change her life.

Ask yourself: at this point, is she winning or losing? She’s off the drugs, as often as not at least. She’s out of Downtown Eastside and that has to be good, right? She has re-established at least some communication with her daughter. But her struggles with depression consume huge pieces of her energy and she’s achingly lonely.

[Speaker]

Christmas was coming, usually a bad time for her. Historically, depression and drug use had always escalated during the holidays. She had managed to sabotage any Christmas plans year after year. Now, she wanted to try to fit into the season. But she knew how she could undermine her own efforts and was afraid it would happen this year. Her plan was to spend Christmas with her family who had moved to a small town in northern BC. She was looking forward to being there for her daughter but dreaded being forced to be around her entire family for several days with no break. But she took hold of herself and managed to be with them through Christmas.

It did not go well. She chose to keep most of what happened to herself and, in the end, regretted going. She did explain that her father had treated her like a bad child. Unable to come to grips with his hostility, she stayed isolated in her bedroom most of the time.

Once back in her studio, she had a stroke of bad luck. . One week after coming home she had a grand mal seizure in the pharmacy. It terrified her to be alone with no phone and think about it possibly recurring.. An appointment was made to see a neurologist in 8 weeks. Eight weeks.

Broke, alone, once again losing hope of reconnecting with her family, now afraid of dying that way, she was to wait it out for eight weeks.

Our scheduled visit was one week later, a Monday. We arrived at the usual time and knocked on her studio door. No answer. Unusual, as she was mostly home these days. We placed a note under her door and left. It didn’t feel right – even then we didn’t like it so we decided we would check again tomorrow.

[Speaker]

When we arrived the next day, the note was still under the door, sticking out slightly where we had left it. We had already checked the pharmacy and knew she had not picked up her methadone on either Monday or Tuesday. The last time she was there was Friday for her weekend supply of methadone and medication which had been reinstated. We called her family but they hadn’t talked to her in days. Their last contact was early last week when Mary’s daughter had agreed to come for dinner that Friday. But the daughter had ended up with other things to do and did not make the appointment. She had not contacted her mother to tell her that she wouldn’t be able to make it. Where was Mary?

We contacted the off-site manager. He appeared without a key to get in. We finally got him to agree to break open the door. Mary was dead in her bathroom. In fact, this ending is too familiar to us. So often our palliative clients die unexpectedly.

[Speaker]

Yes, Mary had made it out of the Downtown Eastside, her living space was better… On the surface her life was better. But, in fact, she had less money than ever, she was more isolated than ever. Her friends remained in the Downtown Eastside, the apartment building did not have a front desk manager or even a pay phone to sometimes use.

Her daughter is haunted by the fact that she did not keep her dinner engagement with her mother on that Friday night. She has rebelled against her grandparents and Mary’s sister. Now they fear she, too, will soon take to the streets. This was two years ago. Last month we met Mary’s daughter by chance. She looked great and was with her boyfriend of one year. She said she had gotten "wild" and done cocaine a lot after her mom’s death but she had changed her life around when she met her boyfriend. He had refused to associate with her if she continued to use. She is an A student at college and she intends to become an accountant. She said "I don’t want to end up like my mom."

[Speaker]

The cycle continues.

Often our clients will die of causes unrelated to their HIV disease. No time to prepare them or ourselves. No decline or palliative phase.

[Pause]

[Speaker]

These folks struggle up and crash down. Up and down. Sometimes the cycle takes weeks or months, sometimes hours. But it is always there. Wrapped in a swirling sea of mental confusion, paranoia and doubt. If you walk away from someone, the next time you have to deal with that person you are going to have to start all over again. And it will be harder. They remember that you were there and then not there.

[Speaker]

It’s far easier, far more efficient, far more effective to just keep up the relationship. A few minutes here, a few there; next time something happens you’re already on it. They cooperate, they trust to the extent they can. But, most importantly, you can get the work done.

[Theresa Garvey]

Someone we have followed for five years is Theresa Garvey. She will now tell you her cycle. We first interviewed her in January of 2000. This was her story then.

[Theresa tape #1]

A few weeks ago we did a follow-up interview. This is how the cycle has continued for her.

[Theresa tape #2]

We don’t know how to end this talk. We never do. This time we have attempted to describe how we and our clients cope.

[Speaker]

It would seem so simple:

[Speaker]

[Speaker]

[Speaker]

[Speaker]

It would seem so simple but, of course, it’s not — finding that delicate balance between too great a distance from the client where you are ineffective and getting too close and being overwhelmed by the environment.

[Speaker]

You have a handout detailing the new initiatives for the DTES. These include such needed services as a 24 hour contact centre, a Lifeskills centre and expanded clinic hours – now 7 days a week and open til 10.

[Speaker]

This looks good. Might well do some good. But these and the other measures being implemented fall terribly short of being enough.

It does not provide for safe injection sites

It does not increase the amount and quality of recovery services

It does not aim to decriminalize drugs

It does not provide for a "red light" district for prostitutes, as does Amsterdam. To date we have 28 missing sex trade workers.

And communication between existing services continues to be very poor. While the new contact centre will provide another entry into the system, it runs the very real risk of being just another isolated island – another unconnected service point in a sea of unconnected service points.

[Speaker]

As we said last time, we don’t know all the answers. We don’t even know all the questions. But one thing we DO know from our daily work on the strip is that the situation is NOT getting better. In fact, in many ways things are worse.

It is estimated that there are now 2,000 HIV positive people in the DTES – out of a total population of 8 to 10,000 in the DTES. That’s 20 to 25 percent of this population.

At best we are treating the symptoms, not the disease. The flood continues.

We would like to end with this moving tribute by Lincoln Clarkes and Kat Kosiancic to the women of the Downtown Eastside, "Heroines."