CANAC 1999

"Dying With Your Boots On" :
A New Strategy From Those Who Nurse the Urban Poor on the Streets

[a talk 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.

What we'll be talking about today are the strategies we've developed for dealing with our client base of intravenous drug using, HIV+ individuals.

[Acknowledgements 1]

We are delighted to be here and we would like to thank the CANAC for inviting us here. We would also like to thank others who have assisted us:
The Vancouver/Richmond Health Board
the BC Centre for Excellence in HIV/AIDS
The Multidx Team

[Acknowledgements 2]

In addition, we are grateful to the following companies for financial assistance that allowed us to bring our guest speaker, Theresa Coleman, to this conference:

Patrick Lauzon, Merck Frosst
Michael McKim, Glaxo Wellcome
Cori Knowles, Bristol Meyers Squibb
Fred West, Agouron

Our agenda breaks our presentation into three blocks: history, the current situation, and some of the things that we do. We will try to make the history brief, the anecdotes witty, and our observations sage and insightful.

If we fall short of our mark and you fall asleep on us, that's ok too. Our clients have been doing that for years.

During this presentation we will be referring to our approach as something we call Action Based Care. ABC for short.


[slide 1] Vancouver is on the West Coast of Canada and enjoys a temperate climate.

There are 1 1/2 million people in Greater Vancouver. We have a [slide 2] vibrant economy and a [slide 3] polyethnic culture. We have [slide 4] much to be proud of in our beautiful city.


[Balmoral slide]

Susan and I work in the Downtown Eastside area of Vancouver. Unlike the

[Roosevelt ]

rest of our beautiful city, this area is home to a


transient population of chemically dependent, mentally challenged and street-involved people. The Downtown Eastside is the poorest area of Vancouver but it is richest in the quantities and varieties of illegal drugs in all of Canada.

[stop using]

We are a port city. Huge amounts of narcotics flow through.

[Evanna alley]

We have each worked for the Health Board for 20 years and have worked together as a team for most of that time. Our agency accepts referrals from hospitals, doctor's offices and community agencies.


We provide hands-on nursing care in the homes of our clients. The home hospice program is through our agency.

[Evanna street]

When we returned to the Downtown Eastside a little more than 5 years ago after a short break we noticed a complete change of scene:

[stop using]

lots more intravenous drug users,


younger people involved,


drugs being sold and used openly on the street. To add to our problems HIV had come to stay.


Now it feels like we work in hell.

We realised then that we were poorly equipped to deal with this population. We had little understanding of the drug scene and how to approach this problem. Where could we learn about this? We flew by the seat of our pants.


Hospital nurses and doctor's offices were also struggling with the stereotyped image of an intravenous drug user as a manipulator/non-compliant person. We needed to overcome our biases toward this population to be effective. We asked the experts: our clients.

[Demographics 1]

The Downtown Eastside has a population over 8000. 74% are male. It is the poorest area of Vancouver and has double the mortality rate of the rest of Vancouver. It is home to a large First Nations population.

[Demographics 2]

Over 5000 individuals are registered with the Needle Exchange which provides up to 50 syringes per day on an exchange basis.

BCCDC slides 6]


[typical living]

Typical Living Situation

• Single room occupancy hotel

• No fridge - no stove

• May or may not have running water in the room

• Shared toilet and bath not necessarily on the same floor


• Mice and cockroach infested

• $325 to $425 per month rent


Most of our clients tell us there is no hope and no chance living there under these conditions.


They really don’t want to be living in the Downtown Eastside. But they aren't able to move.

[multiple diagnosis]

A lot of the clients we see are dual- or multi-diagnosed, i.e., they have a substance abuse problem; they may have a history of mental illness; they may be HIV+.

[P. slide]

This fellow is ill with schizophrenia and is a victim of the downsizing of Riverview Mental Hospital. He is a gentle, sweet man who is very lost and is palliative at this stage. Since this photograph was taken he has moved into supported housing where his meals are provided and his medications are administered daily by the staff. He continues to inject pyribenzamine, an over-the-counter antihistamine, but less frequently. Since he began receiving this care he has gained weight and his quality of life has improved.

[P. 2]

The Multi Diagnosed Person usually comes from an abusive background, physical and/or psychological. They have very low self-esteem, are unemployable, often have criminal records. Their first experience with an illegal substance is usually by the age of 9. Many have lived in multiple foster homes.


In a few minutes we will describe how the onslaught of HIV disease has changed how we look at a substance user.

[immune system]

But we first have to point out that the diagnosis of HIV doesn’t rate high on our clients' list of relevant situations. They already live on the edge. Any number of things could kill them on any given day. It is very difficult for them to get worried about something that might kill them a year or so down the road.

Their immune system has already been adversely affected by:

intravenous drug use

extreme poverty

poor nutrition

sub-optimal personal hygiene

transient housing

lack of knowledge

[multiple hospital]

They have frequent admissions to hospital for conditions such as:





Pneumonia (community acquired & PCP)

Liver & kidney failure (secondary to heavy alcohol intake
and Hepatitis C) [90% of IVDU's are Hep C+]

Then there is the compounding effect.

It is estimated that people infected with both HIV and TB are 400 times more likely to develop active TB. We have an epidemic of TB in the Downtown Eastside.

[Drugs are the landscape]

And there is always the presence of drugs.


For many of our clients, abstinence from drugs is not a viable choice. Even if it was a choice, there are almost no workable options.

Detox Centres in Vancouver are not adequate in the way they are now set up.

• Few spaces available for women.

• Long waiting lists.

• Inadequate treatment centre follow-up.

• No methadone programme, etc.


Due to their chaotic lifestyle and unstable housing, a lot of our clients are not capable of complying with the rigid protocols of antiretroviral therapy. Yet without this intervention their disease will progress more quickly.

It is clear that supplying appropriate nursing service to our clients often requires methodologies outside the boundaries of traditional practice.

Here lies the Challenge for caring for this population.



Our talk is title "Dying With Your Boots On" and refers to the palliative (or lack of palliative) experience of most of our clients.

[Theresa O2 tanks]

Palliative care in the Downtown Eastside looks very different from the traditional palliative care that you may be used to seeing in a middle class environment. In fact one could say that "all care is palliative in this setting."

[myth palliative care]

Palliative care currently makes a number of assumptions that are too rooted in the middle-class family experience to work in the Downtown Eastside. These assumptions range from family support to a safe home environment and a clearly developed perception of self-worth. The image that would usually come to mind is caring for your loved one in the family home rather than in the hospital.

[P. fire escape]

That conventional model of the palliative setting falls apart in the Downtown Eastside. There are no traditional homes here. Most of the clients who live here spend more time on the street than they do in their so-called homes. Their homes are tiny rooms with no amenities, no safety and no security. They use them as a place of refuge in the most basic sense of the word only.

[Home is ...]

To most of our clients, home is a long stretch of the city, running from their room to the hospital. Sprinkled along this line are various places to score, get high or fed, beat up or thrown in jail.

[alley slide]

One almost has to wonder whether our palliatives can be called palliative clients.

[classic vs Downtown Eastside]

They have all the symptoms: limited mobility, terminal or intensely debilitating disease. But their lifestyle does not really translate to our stock idea of palliative. The environment that is an essential aspect of the classic definition of palliative is simply not there. In fact, twenty-four hour end-of-life nursing, a standard option elsewhere in Vancouver, is not possible in this setting due to the inadequate and unsafe housing.


Our clients have an important job -- feeding their habit. This means they do not lie in bed like you or I would do and receive optimal medications & support to control their symptoms. They are out on the street hustling money to score drugs. They often control pain by self-medicating (because we do such a poor job of it).

Pain control for this population is poorly understood and managed. Most clients have a low pain threshold and a high drug tolerance. They are frequently denied adequate pain control medication due to environment and addiction issues.

[Keith slide]

We have heard physicians say they cannot prescribe narcotics for such clients because they fear they will misuse or sell them. An increased dose of someone's daily methadone can be helpful but for a significant number this is ineffective. We have seen success with a controlled release Fentanyl patch. We feel that the medical profession fails miserably to manage an IVDU person's pain unless and until the person is in a controlled setting.

[Theresa cutting dressing]

And try as the client might, they cannot behave the way we need so that they can be seen to be a "compliant palliative".

They are often seen as aggressive, self destructive, paranoid, with a vague sense of what we would call ethics. They do have highly developed social skills. But they are honed to the business of street life. We have already defined them as non-compliant long before their health starts to stumble.

[Henry slide]

We cannot forget the frustration in Henry's voice as he tried to explain to us how difficult it was for him to keep all of us happy. By us he meant the doctors, social workers, hospital staff, community nurses and homemakers. Much of what we demand of him is not possible in his world. Two weeks after telling us this while trudging up the street to get his methadone, Henry died.

[P. and Evanna]

People in the Downtown Eastside have had bad experiences with authority. They look on it as something to be endured. Their world is one of the hustle. And power in that world flows not from authority, but from drugs.

[rig slide]

The drugs are always there. Doctors go home. We go home. The police and the paramedics go home. But the drugs stay. And of course so do the people who take them. But then that's the point: they live here, where the drugs are.

[woman and Evanna]

Palliative care means more than music therapy. In this setting it means walking down a rocky road with the client. Often you will not be let into their life.

[trust is ...]

Our clients are survivors. They have learned that trust is not a good survival tactic. They do not use it. It can take years to show them what trust can do. They may never learn. And whatever trust you might build up can be demolished in a moment.

[alley toilet]

There are few viable choices in this environment if your client is trying to stay off drugs.


And we have the question of our goals. Yours and mine. Ask yourself: do we provide palliative care in the Downtown Eastside to keep the clients in their home as long as possible? Or is it to keep these people out of hospital as much as possible?

So in this light, what constitutes palliative care? Can we translate family and down comforters to dealers and back alley hits?


It seems that no matter what we do they die with their boots on.

Our goal is to maintain these individuals in their own environment. They do not function well in a hospital because their substance needs are not addressed in a manner that works for them.

No therapy, no matter how lofty, how excellent its goals, can make one drop of difference if it ignores the fact of the constant presence of drugs.

All too often our clients travel their road alone. They do not have the support of family, friends or the medical profession.

[alley slide]

We have found that few actually have what would traditionally be called a palliative experience. The local hospice is accepting of this clientele but what often happens is that a client goes in too soon, when they are still out & about actively pursuing their lifestyle. Often they respond modestly to the good care. But then they exploit the situation and end up back on the street. It's just a matter of time before they crash. When they do, it is then a crisis needing acute hospital care.

[woman and Evanna]

{count to 5}

Bev died 48 hours after admission to the Palliative Care Unit; Maureen died after 3 days on the HIV ward and Russell lasted seven days after admission to the local hospice.

{count to 5}

So what, you ask, does our care include?

[Belinda with pills]

We do this:

We remember the basic concepts of Harm Reduction.

We respect our client's rights and wishes and we construct an action plan based on that particular client's universe.

We try things that have worked before. The ones that work we repeat.

We don't take no for an answer

people may have the wrong reasons for saying no

until we are convinced they are saying an informed no, we do not give up

we still maintain a casual contact on the street

Not being home does not mean no contact. It may mean fishing someone out of

the party in the next room

the bar next door or

the soup kitchen down the street once, twice & even three times.

We remain flexible enough to respond to an on-the-fly referral from a client friend, hotel manager, other health professional. If we are lucky we will inherit them and continue to see them on a regular basis. It may be a brief one-shot contact for an immediate problem.

So you call us aggressive? We do what we must to get the job done!

This is what we mean by Action Based Care.

As we just said, what works varies. But here are some general things we can do:

[slide 1][slide 2][slide 3] {SLOW. SPEAK TO SLIDES}

We aim to effectively manage chronic abscess care in a climate of rampant MRSA,


monitor for opportunistic infections such as pneumonia, septicaemia, cellulitis, oral thrush, herpes zoster etc.

[Dr. Burgess]

We involve the outreach physician to help manage the infection at home.

If they become progressively sicker she will pave the way for admission to hospital. This involves convincing the person they need to go in for treatment and then physically shepherding them in our car to the emergency room. Time permitting, we stay with them until they are admitted or at least settled.


We know our clients have a hard time conforming to the long waits of the Emergency Room. Some of you have endured similar waits. Our clients have no coping skills when their need for drugs is present. In addition they are often discriminated against in such a setting.

[Theresa at pharmacy]

Methadone is a controversial issue in the Downtown Eastside. The client must go to a doctor who has a methadone license for the prescription and then receive it at one of the designated local pharmacies on a daily basis. They must line up at the pharmacy and drink their dose in front of the pharmacist. And in front of other customers in the store. Putting yourself in their place, how much of a hurry would you be in to do this? Remember, very effective "methadone replacements"{gesture} are available within a few steps of their room.

They tell us they often do not get a sufficient dose to prevent being drugsick and that some physicians reduce their dose if they do not comply with set conditions.

Someone - somewhere - seems to think that this is a good idea.

[Sue quote]

There is a new plan to tie other care, be it dressing changes, medications such as antiretrovirals or prophylaxis therapy to methadone compliance.

This is NOT the way to go. It is coercive and counter-productive. Chaotic, cocaine-using clients who are started on methadone in hospital are not motivated to faithfully show up each day for their daily allotment. It does not meet all their drug needs. Of particular concern is the idea of tying antiretrovirals to methadone dispensing. We feel one should never tie antiretrovirals to addiction care unless the client says it is helpful.

Under such programs, clients who miss their methadone are forced to miss their medication, running the risk of developing resistance and limiting future therapy options. This can amount to a death sentence.

[asks for help]

If your client actually asks for help (a difficult first step), they mean it. Attaching an endless array of strings only reduces the chance of them succeeding.

The use of "Harm Reduction" as justification for negative and coercive techniques allows support of methods that simply don't work. As an example of this, the withholding of any one drug to force compliance in the taking of another almost always leads to the client taking neither. Instead, the client reacts by severing contact with most or all of the healthcare system. This works only in the sense that the person is no longer "on the books." [Of course, soon enough that person will be back in worse shape than ever.]

It's not the only way, certainly not the best way, to handle methadone compliance. As an example, consider the program we recently walked through in Amsterdam.

{refer to handout}

There, we saw one way methadone can be handled in a respectful, non-judgmental fashion. There are certainly others.

[Evanna filling syringe]

Clients need support regardless. And remember many have no reason to build trust. Clients are afraid to be honest about drug use for many reasons - they fear losing key caregivers, fear being penalized with a reduction in all types of their medications. The street reality is: honesty is dangerous.

So our clients pretend to be whatever you want them to be. You want a model citizen, you get a model citizen. For a while anyway. They don't want to die, don't know how to trust, so they fake it. And stay ready to grab and run as soon as they feel good enough.


And now HIV care is offered as a carrot. The message is "take the meth or enter rehab or whatever and we will let you live." This is not health care. This is policing.

Even when it is not policing, coercive behaviour can have unfortunate consequences.

[Belinda with pills]

Take the specific example of antiretrovirals.

When is the right time to start them?

The right time is when the person tells you they are ready to start.

The thinking is that any reduction of viral load is beneficial and a basic right.

Here's what can happen: a client told the doctor that she wanted to go on antiretrovirals because she had been told that this would reduce the viral load in her vaginal fluids. She reasoned that this would let her stop using condoms, as her tricks preferred that. She asked the doctor if this was true. The doctor, in one supposes an attempt to keep her using condoms, said no. So no cocktail. Will this insure she uses a condom? Absolutely not. It will have no effect on her behavior at all. It just means she will continue to provide sex without a condom at high risk for both involved. Instead, the answer could have been: yes, antiretrovirals will ultimately reduce the viral load, but only if the meds are taken following a strict schedule. Then a window of opportunity would open.

HIV is a slow disease and many of our clients die from causes related to their drug use and lifestyle rather than their HIV. How much success have we seen? On paper the next slides are impressive. (Susan, the "stat lady" will interpret them for us):

[antiretrovirals 1]

[antiretrovirals 2]

[antiretrovirals 3]

[antiretrovirals 4]

We have seen many deaths in twelve months from seizures, liver & kidney failures, pneumonias and overdoses.


We find they do stabilise a little if they are in a supported environment. And then they do indeed benefit from antiretroviral therapy. But for many the reduction in viral load seems secondary in terms of their overall health.

Why bother, then?

We bother because we have seen that opportunistic infections are less frequent and less severe in someone on closely supervised therapy.

We bother because we have seen decreased viral loads despite periods of non-adherence.

We both because it is their basic right to receive this care.


When visiting new clients we often find full bottles of pills for a complex cocktail. They have either never begun or not continued to take them. Many have a fear of taking pills or they are unable to understand the concept of rigid daily adherence. They often have incomplete information on how the drugs work, what resistance means and when and how to take them.

Most of our clients do not retain information and need repeated, consistent explanations.


For example, one day Don told us that he had decided to take his Crixivan at bedtime only instead of three times a day. Because he had a lot of pills to take each morning and "too many pills are not good for a person."

This slide shows an example of a totally impossible regime for our cllients to follow. It's too complex, too many times a day dosing, some with food and some without.

[antiretroviral choice] {LOOK TO SLIDE}

Simple dosing prescription with fewest side effects and team support.


[Theresa antiretrovirals]

Our clients cannot reliably attend the ambulatory pharmacy where the drug cocktails are normally dispensed. Currently, we are having some success by ordering, picking up and delivering the antiretrovirals. There are some logistical problems. The medication is sent to three sites in the Downtown Eastside, not to the local pharmacy or to the client. This creates a complicated situation where their regular medications will come from one source and the antiretrovirals from another. It demands coördination to ensure all meds get to the client at the right time.

We pre-pour a dosette each week, often monitoring daily for side effects and providing encouragement.

[medical management]

In some cases it is necessary to keep the pills locked up at our health unit and deliver them to the client daily. Consider such factors as flimsy door locks on hotel rooms, many people in and out of the client's room, the potential street value of the medication

In negotiating with our clients we find it is "different strokes for different folks." Some want us to carry the pills in each week to fill their dosette. They know themselves the difficulty they would have to keep them secure in their room. Some know they need daily assistance to succeed with their meds. We find out what actions will help them succeed and we do that.

[Theresa 2]

For example, Jane wanted to be on the cocktail and was started on triple combination therapy 12 months ago. When we confirmed that she was only taking 25% of her cocktail the therapy was stopped. It was not until she required daily visits for extensive leg ulcers and she resumed a low threshold methadone program that she wanted to try again. Her regime was simplified to once daily (experimental at present), administered at the time of her dressing change with a can of her favourite strawberry Ensure supplement. We stay with her until she has swallowed all 10 of her pills and liquid medication. She has been successful for months and has a sense of accomplishment.

Recently, however, she has been diagnosed with severe liver & kidney problems secondary to Hepatitis C & ARV's. She is having a medical workup to help decide the best course of action but the prognosis seems poor.



[harm reduction] We follow a harm reduction philosophy.

Harm reduction is both an attitude and a set of practices. In this model, limit setting is based on behaviour, not on the drug use itself.

[rig 1]

We do accept that, for most of our clients, abstinence is not a viable option.

[rig 2]

But we seek to reduce the harm one does to oneself and others.

To build a meaningful relationship with our clients we work to develop trust by


being consistent and reliable, that is, by regularly scheduled visits by the same nurses whenever possible

having a non-judgmental approach and accepting that abstinence from drugs is not an option for this population

refusing to put off by an abrasive welcome & remembering we are guests in their home

working collaboratively with the client to establish a plan of care which recognises the client’s autonomy

[see past ...]

seeing past the behaviour on the street

supporting the client but not the habit


For instance our approach to wound care is guided by the client’s pain tolerance (which is usually quite low), their attention span (usually short) and their preference for wound care products. Any one of these - especially the last one - may cause us to not strictly adhere to our agency's protocols.

Our first priority is to deliver care that is client-driven. This is consistent with Harm Reduction.


In terms of wound care, our goal is to clean and cover a wound by any means acceptable. We want our clients to feel motivated to return for further treatment. We learn to match our actions to things that work for that client.

For substance users who are generally controlled by their habit, the ability to use some harm reduction strategies gives them a sense of control and empowerment, which may be the starting point for change.


[Action Based Care]

We call our approach to nursing in this area Action Based Care.

The underlying assumptions of Action Based Care are:

the client is capable of choice when supported

the client and the caregiver are prepared to negotiate

agency policy changes too slowly

[Action Base slide]

Theory-based models rely on a set of rules & regulations set up by different agencies.

Reaction-based care is appropriate to emergencies of the type that the paramedics must handle.

Action Based Care draws elements from both. It combines harm reduction theory with get-it-done actions based on field experience. That is, we enter a situation with an open mind willing to do what is necessary to meet the clients needs. We may bend the rules of our agency. We certainly focus on adapting to the changing, immediate needs of the individual client. We do not try to fit round pegs into square holes.


We make small gestures to build and secure a relationship with our client. These include such things as giving nutritional supplements, money for cigarettes, coffee, bus fare, advocating on their behalf, assisting them in filling out complicated forms and arranging transport.

A simple thing such as a package of cigarettes or a chocolate bar can develop an attitude that may help complete their treatment.

[fine line]

There is a fine line between enabling v. compassionate, adaptive care. [EXPAND]

[Kendra and Evanna]

It takes time to learn and adapt to this approach. Clients take a long time to develop trust and a nurse who is unfamiliar or unsympathetic will not survive. Philosophies differ among nurses. If you are going to work in the Downtown Eastside you must make clear to yourself your goals.

If you chose to define the use of drugs as a criminal problem, then you would be more effective as a law officer. If your goal is to keep people alive long enough to find a way through the Downtown Eastside maze, then healthcare delivered with compassion is your calling.

[WISH Evanna and Susan]

Some of you may say, "You are breaking the rules." Who are the rules for? Who are we serving? If we are to meaningfully serve this population, then it is our obligation to look first to the client's needs whatever they may be and then to change our practice to meet those needs.

For example, our agency frowns on nurses transporting any medication yet, as mentioned earlier, for our population it is essential we do so. So we do!

There will always be conflict between the goals of our client, the goals of structure to support the client & the field staff who must administer the structure.

[Successful outcome]

What is a successful outcome for us?

Clean and off drugs? Almost never.

Clinically stable? An achievable goal as demonstrated in previous slides showing decreased viral load with antiretrovirals.

Three square meals? Unlikely but improved nutrition and weight gain are possible with Ensure supplement and free meal delivery. And sometimes we manage to improve their housing. We measure achievement by small victories e.g. a cleaner more comfortable room or taking meds despite drug use.

Two of our hard core pyribenzamine users had repeated severe abscesses. For four year we have been providing twice weekly wound care at our clinic in the Portland Hotel. During this time they have had two brief hospital admissions.

[find flexible ways}

We seek to find flexible ways around problems rather than justifying why we won't/can't do something. As an example, our agency's policy of "3 strikes, you're out", whereby a client is struck from the rolls if not home upon 3 successive visits, is not acceptable here. In this model whenever necessary we question the validity of the rule and find ways around it if needed.


{pause} [Sharon on bed]

What we do most is regret. That we can't do more. That in most cases real change is not going to arrive before death. That we are so totally helpless. Often the only thing we can really do, the only thing left for us to do, is bear witness to their suffering.














Sometimes we are blessed with success stories. On of those is our guest today, Theresa Coleman. She will now speak on "Surviving the Streets."

Theresa talk : [Theresa on O2 {leave up a long time}], [Theresa & Evanna], [Kitchen], [Theresa, Susan & Evanna], [Theresa]




Oh, this is a tough act to follow.

In summary.


We need to further improve networking with other health professionals who are all out there involved in HIV care such as outreach workers, physicians, clinic and hospital staff. It is important for us to start working together as a team.

We need to continue to work at changing restrictive policies that do not meet the clients' needs.

We need to educate ourselves and listen to the clients we are trying to serve. We underestimate their ability and forget they have a right to make a choice.

We need to be advocates for our clients, particularly women who are especially vulnerable, oppressed and are often afraid to speak out.


We need to continue to lobby for "one stop shopping" whereby our clients can get all their needs met in one place, instead of having to spend their day traipsing around the War Zone to get their medication, methadone, medical appointments, financial assistance, needle exchange and food.

We need to press for more treatment centres and support following treatment.

We need to push for intermediate housing (neither hospice nor hospital but somewhere in-between), perhaps modelled on Montreal's "Chez ma Cuisine".


This is what we have accomplished so far. We don't have all the answers. We don't even know all the questions. It is not ideal and we are at best treating symptoms, not disease. The flood continues.

We would be happy to answer any questions you might have.