Frontline Healthcare for the Urban Challenged
Action Based Care, ABC, is a methodology designed to deliver healthcare to the disadvantaged citizens of the urban core.
Action Based Care, ABC, is a methodology designed to deliver healthcare to the disadvantaged citizens of the urban core.
ABC has five core principles.
being consistent and reliable
having a non-judgmental approach
working collaboratively with the client
seeing past the street behaviour
supporting the client but not the habit
The first behavior is flexibility. That is, being able to adjust and respond quickly, on the spot, to situations.
The second behavior is learning the culture of the community.
Our Patients 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.
We have used our experiences to develop a model of palliative care delivery we call Action Based Care or ABC... Of being there, where they are. If the client is in need at that moment of some food because they are very hungry, then that need must be attended to first, no matter if the referral is for wound care.
Highlights of the model are:
· being consistent and reliable — rotating many nurses through this environment has a negative impact. Service from a small core team of familiar faces assists in building trusting relationships with a population that have learned trust is not a good survival tactic.
· having a non-judgmental approach and accepting that abstinence from drugs is often not a viable option for the population in this drug-saturated environment — triggers are everywhere.
· working collaboratively with the client to establish a plan of care which recognizes the client’s autonomy.
· seeing past the street behaviour to the person within.
· supporting the client but not the habit.
There are two important behaviors required to allow this model to function:
The first behavior is flexibility. That is, being able to adjust and respond quickly, on the spot, to situations. One important aspect of maintaining flexibility is the willingness of the team to negotiate an exchange of services with the client. If the client’s immediate need is not met, there is little chance of them allowing any health intervention.
The second behavior is learning the culture of the community. Each population has a unique culture. Learning the culture and how to communicate within it is a necessarily slow process. But it is essential to building effective, appropriate intervention. Our team has adapted the principles of palliative care to the realities of the urban street drug culture. We learned it from our clients. They know what they need and we know what we can deliver. Once one gets the hang of it, it’s pretty simple to get them to coach us in the best way to deliver our services.
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.
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.
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:
· they go to jail
· their son, parent, sister, dies
· a best friend goes to jail or overdoses
· their partner/lover beats them up, the relationship disintegrates, one of them often ends up in jail or dead
· they go to hospital which forces everything to change. When they come out, they might find everything they own in a cardboard box or simply gone.
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.
Other things weigh in here. Because they are always just on the edge, everything has massive consequences.
· They disappoint their doctor, so he gives up on them.
· Their bad behavior gets them banished from the clinic. Or food line. Or community center. Since one bad experience can leave them angry for days, any one of the problems can lead to all the others.
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 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.
And here comes yet another opportunistic infection. They get very ill and are admitted to hospital with infections such as septic joints, cellulites, endocarditis, septicemia, hepatitis complications etc.
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 now it is only a matter of time before their disease worsens and a crisis in the form of a severe opportunistic infection necessitating a hospital admission will occur. In many ways it is like watching a traffic accident that you are powerless to prevent.
We have learned that there is a cycle to this – good for a while, off the wagon and down, then up again, then down. Maintaining a relationship with the client even when they go off treatment is of paramount importance if you are to be allowed into their life when they are truly terminal. 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.”
Evanna Brennan and Susan Giles: Bringing Action Based Care to Vancouver’s Downtown East Side
Home-care nurses Evanna Brennan and Susan Giles have been providing life-saving care to people living with HIV/AIDS and significant health issues in Vancouver’s Downtown East Side (DTES) since the 1980s. They saw the beginning of the HIV epidemic and witnessed the drug and overdose crisis develop into what it is today. Throughout it all, they have remained stalwart pillars care and compassion for Vancouver’s most vulnerable population.
The DTES is a neighborhood in Vancouver with disproportionally high levels of drug use, homelessness, poverty, crime, and mental illness. These problems began to ramp up in earnest in the eighties with an influx of hard drugs and the start of the HIV epidemic.
“Lucky or unlucky, we just happened to be there at the beginning,” says Evanna.
Adapting home-care nursing
Susan and Evanna recognized that typical home-care nursing methods did not fit this patient population, so they adapted the process to work in these circumstances. Their patients would not go to clinics, so they would track them down and bring care to them. Sometimes that meant asking someone’s drug dealer where to find them, or dressing a wound in a bar.
Before there were effective HIV treatments, they mostly provided palliative care, but palliative care looks different for someone who uses drugs. They learned how to provide care in that situation together with an outreach doctor, Susan Burgess, who they continued to work with over the years. They also received support from the BC Centre for Excellence in HIV/AIDS.
An innovative model for nursing – Action Based Care
Susan and Evanna used their experience to develop an innovative model for nursing called Action Based Care. It is a holistic, relationship-based approach to medicine that incorporates harm-reduction principles. It is designed create access to care and meet patients where they are. A core part of it is respecting the patient’s autonomy and space.
“It’s that respect. The same way that you would want respect if a health person came into your home,” says Evanna. “That’s hard to do, when you know you can help them, or make life much easier for them. But it’s not what we’re asked to do by them.”
Action Based Care also involves putting aside any judgements or prejudices to focus on building care around what works best for the patient.
“It’s not easy to like people who uses self-destructive things,” says Susan. “But you have to kind of accept that, or you’re always going to be in conflict over what you’re doing.”
They go above and beyond typical home-care nursing, including buying food and other supplies out of their own pockets. Filling those needs helps build the trust needed to get the nurses through the door, and the relationships that are a core facet of Action Based Care.
Susan and Evanna have fond memories of one of their patients, a woman with HIV who was twenty-two when she passed.
“She was easy to love. She really was easy to love,” says Evanna. In the end, she could not really eat, but she loved slurpies. Susan and Evanna would bring them to her. “I’m so glad we did that.”
Persevering through the years
The two retired from their positions with Vancouver Coastal Health in 2012, but continue to provide care as independent contractors. The DTES has a reputation as an unsafe area, but people there are protective of Evanna and Susan. They stick out as nurses, and their patients - and their patient’s drug dealers - know who they are.
Their close partnership has been key to them being able to continue this work for so long. They originally went out as a pair for safety, but quickly realized the benefits of being able to combine their expertise to provided augmented patient care and support each other through chaotic situations.
Their compassion has also driven them to continue.
“If you’ve seen someone die of AIDS, you will do anything to get that person to be able to take the meds, to stop looking like a skeleton and being so sick,” says Susan. “And we had seen that, so it really spurred us on.”
The problems in the DTES have only grown more severe over the years. In one building they work in, nine people have overdosed in the last two months. Susan and Evanna used to go to every funeral. Today, they can’t keep up.
“I didn’t think it could get worse, but it is worse. The drugs are worse, the homelessness is worse, the street scene is more violent,” says Susan.
“And the overdoses are shocking,” says Evanna.
Contributing to nursing education
Susan and Evanna have shared the knowledge they have gained over the years, contributing significantly to nursing education in BC, Canada and beyond. They have taught nursing students from Canada, the US, Europe and Asia, and have presented in national and international conferences.
They want to continue to mentor other nurses and help influence the next generation. They hope that the documentary that covered them and their work, Angels on Call (2020), could be used as an educational tool and help spread the philosophy of Action Based Care.
Susan and Evanna have saved uncounted lives over the years by providing lifesaving medication and wound treatment to those who otherwise would have fallen through the cracks of the medical system. They have reduced harm and built relationships with some of Vancouver’s most vulnerable people.
The health care problems in the DTES do not have simple solutions, but in Susan and Evanna’s knowledgeable opinions, increasing housing, shelter beds, and access to mental health care, along with better long-term addiction treatment and recovery, could help alleviate some of them. They would also love to be able to break down the barrier of people being afraid to approach drug users and others who live in the DTES.
We focus on doing Patient healthcare "where they're at." While a basic idea dating back over a century, it is a dynamic approach. You can add your voice...
For more on the methodolies and principles of Action Based Care, here are some links...
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