INTRODUCTION
Beginning with models developed in the third world, community health
outreach workers (CHWs) have been successfully employed in the United
States and elsewhere to bring health care to underserved and stigmatized
populations (Warrick et al., 1992; Castro et al., 1995; Elwood et al.,
1995; Morse et al., 1996; Rodney et al., 1998; Chen,
1999; Rahimian & Pach, 1999; Fried, 2000; Jack et al.,
2001; Felix-Aaron et al., 2002). Thus
far, little attention has been given to the critical role that CHWs can
play in bringing palliative care to patients dying of AIDS and other
illnesses in our inner cities.
The CHW, known by 30 or more names in the world literature, plays a
pivotal role in health care as “an indigenous outreach worker who is
trusted and respected in his/her community, and who serves as a bridge
between peers and health professionals” (Rodney et al., 1998, p. 371), who is “part teacher, part
friend, part advocate” (Warrick et al., 1992, p. 24).
The usefulness of community health outreach workers in palliative care
for isolated rural indigenous populations, in Australia, as well as in
Canada and the United States, has been recognized (Fried, 2000). The roles of “a key worker”
(Robinson & Stacy, 1994) and of the
“ethnic liaison officer” (Jack et al.,
2001) have been described in the delivery of palliative care to
urban, minority populations in the United Kingdom.
Individuals with AIDS in the United States live predominantly in inner
cities. They are young and are members of racial and ethnic minorities.
Many are substance users, and an increasing number are women (Matheny, 2001). Though they may live near major health
care centers, these patients are often as isolated and alone as if they
lived in the wilderness. Their frequent histories of trauma, abuse,
and/or drug addiction, compounded by their stigmatizing medical
illness and the added burden of cultural and language barriers may leave
them alienated from their families, community, and the health care system
(Robinson & Stacy, 1994; Gibson, 2001; O'Neill &
Marconi, 2001).
Despite the great advances heralded by Highly Active Antiretroviral
Therapy (HAART), the total number of patients infected with HIV continues
to grow (Selwyn & Rivard, 2003b).
Individuals continue to engage in high-risk behaviors and continue to
acquire HIV in undiminished numbers, encouraged by a mistaken belief that
the disease is now curable.
Patients treated with HAART struggle with drug toxicities and side
effects and the difficulties of adhering to a lifetime of complex,
multidrug regimens (Brechtl et al., 2001). They
face a 50% chance of virologic failure within 1–2 years from
nonadherence, and progressive viral resistance patients may not show
immune recovery despite HAART, and remaining vulnerable to opportunistic
infections. Even when HAART remains effective, HIV-related cancer and
Hepatitis C are killing increasing numbers of patients (Easterbrook & Meadway, 2001; Selwyn & Rivard,
2003a, 2003b; Volberding,
2003).
Although many patients are restored to high levels of functioning,
many others require care as they enter the prolonged, symptomatic phase of
late-stage HIV disease. In effect, our therapies have “converted
death to disability,” which has required new expertise in providing
comprehensive pain and symptom management and other palliative care
services (Foley, 1994; Goulet
et al., 2000; La Rue et al., 1994; Kelleher et al., 1997; Selwyn &
Arnold, 1998; Selwyn et al., 2000).
Ethnic and racial minorities are not being reached by such palliative
care services (Sambamoorthi et al., 2000; Gaffin et al., 1996; Moss,
1990; Gibson, 2001; Grady et al., 2001; O'Neill
& Marconi, 2001). Families with historically poor access to
medical care are confused and suspicious about why their loved ones are
dying from what they have been told is now a treatable illness and why
palliative rather than curative care is being offered. Families, as well
as medical providers, may simplistically “blame the victims”
(Ryan, 1971), out of a mistaken belief that the
only people who die of AIDS are substance abusers and the mentally ill who
cannot comply with HAART. And living amid addiction, suspicious and
fearful of the use of narcotics in pain management, they may reject
palliative care even when it is offered.
CASE NARRATIVE
Growing up in the South Bronx I witnessed many deaths. When
someone died we talked about it briefly, got used to it and moved on until
the next time. It just didn't surprise us.
I had worked in both HIV, as a HIV-testing counselor, and in
Substance Abuse, first doing volunteer work with drug programs, then
training as a counselor. I first heard about “palliative care”
at a meeting of the Bronx HIV Care Network, and learned that there was a
position available for an outreach worker on a team of doctors, nurses,
and social workers working with people dying from AIDS. They said this was
not a position for just anyone. I would have to deal with patients who
were all going to die, and would have to be able to cope.
Having witnessed so much death, I was excited by the idea of
making a difference in the experience of people who were dying. I would
have the chance to bring patients and their loved ones to appreciate one
another after so many battles, to come to a place of acceptance and
caring, and letting go. I accepted that responsibility, and it has become
my mission and reward.
Maria R: The Woman Who Never Was
Maria R is a 54-year-old Hispanic Woman with AIDS, who has been
unable to tolerate HAART. She suffers from advancing cervical cancer with
recurrent PID that has left her with excruciating pelvic pain. She also
has intermittently unbearable pain from shingles.
Maria doesn't officially exist. She is an undocumented native
of the Bronx, without a birth certificate or a social security number. She
never knew her real parents, who apparently abandoned her as an infant.
She was taken in and raised by a caring woman in the neighborhood, who
never sent her to school. When Maria was a young teenager, the woman died
and Maria was left to fend for herself on the streets of the Bronx, where
she became the victim of abuse, multiple rapes, and the ravages of drug
addiction.
Maria lives in a room in the basement of an old hotel that has
been converted into Single Room Occupancy (SRO) housing for the homeless.
She has been in and out of the hospital, but due to her undocumented
status, Maria has had no continuity of medical care. She was referred to
the HIV Palliative Care team by a Montefiore medical team that provides
outreach to homeless individuals with HIV.
1. Meeting and Engagement
I was the first team member to make contact with Maria, who was
living in the basement of a once grand, but now decrepit, SRO hotel. Her
airless room had no windows, it stank of the insecticide that was used in
a losing battle to control the roaches, and its ceiling was crisscrossed
with sweating pipes. Paradoxically, this squalid underground room was one
of a few special rooms reserved by the management for those residents of
the building who were sober and not actively using drugs.
A small, slight woman, Maria was wary at first, remaining standing
and looking me over. She slowly warmed up after I told her that I was from
the neighborhood and was here to try to help. I showed her the small brown
bag I was carrying and told her that I had brought coffee for both of us,
then asked if I could sit in the chair by her bed, because I was going to
stay for a while. Her face lit up with a crooked smile; she gestured for
me to take the chair, sat down on her own bed, and visibly relaxed. As the
conversation progressed, I encouraged her to let me know what was going on
and what she needed. I took it slow, at her pace, without pressure,
mindful that most patients with HIV are assuming that they will be judged
and stereotyped upon revealing their personal information.
Pain was clearly her greatest problem. She rated her pain as a 10
on a 0–10 scale, and complained bitterly that the nurses and doctors
had failed to take care of her pain in the hospital. Maria didn't
understand why she was suffering so much, and angrily blamed the doctors
for mistreating her.
Reflections
Outreach means meeting people where they live, in their apartments or
SRO rooms, in shelters, soup kitchens, and on the streets. In “The
Tipping Point,” Gladwell (2002) has called
this “the power of context.”
The CHW not only comes to the neighborhood, he comes from the
neighborhood. As an insider he is met with less suspicion. The CHW has
credibility, not shared by other members of the palliative care team, and
is able to “act and talk like the ‘homeboys,’ gain
trust” (Elwood et al., 1995, p. 253) and
“appreciate the context of … street culture … creating
trusting relationship” (Rahimian & Pach, 1999, p. 1993).
Creativity and flexibility play an important role in establishing
contact. Carefully thought out self-disclosure by the CHW substantially
enhances engagement (Dixon et al., 1998).
Bringing coffee or food, offering to go for a walk in the park, and
identifying and engaging the patient in something that interests without
any other agenda are powerful interventions. They demonstrate action,
which speaks far louder than words in conveying a sincere offer to help
(Shern et al., 2000).
Patience is an essential ingredient, as well. A number of visits may
be necessary to establish a working relationship.
2. Cementing the Relationship by Addressing the Most
Pressing Need
Maria was in severe pain, and relieving that pain was my first
priority. I picked up my cell phone and told Maria that I was calling our
nurse practitioner “right now,” because we needed to help with
her pain. The nurse practitioner agreed to come to the hotel the next
morning.
Reflections
Studies on CHWs targeting a multiplicity of health problems
demonstrate that it is critical to address patients' most pressing
needs, immediately and concretely, in order to establish credibility and
begin to develop a relationship. By coming to their homes to assess their
patients' needs, CHWs begin to demonstrate that they, unlike other
health care providers the patients may have known, are both accessible and
responsive.
Frequently, help with the basics of food and shelter must be provided
before other issues can even begin to be addressed (Morse et al., 1996; Rahimian &
Pach, 1999). In palliative care, pain management is usually the
first priority (Doyle et al., 1998).
3. Addressing Pain and Addiction
The medical team had prescribed many pain meds such as Oxycontin,
Fentanyl patches, and Actiq, but Maria reported that the pain relief
lasted only for short periods.
Each visit I found her in pain, and spoke to her medical team. I
learned that they were not increasing Maria's pain medication because
they had become convinced that her husband, Jose, who unofficially lived
in the SRO with her, was an addict who was selling her medication on the
street.
I began closely monitoring Maria's medication and sizing up
her husband. I met several times with Jose, who freely admitted to using
drugs in the past, but told me that he had been clean for many years. I
was convinced that he was not using drugs now. I had a number of
conversations with Maria's doctors, confirming that Jose was very
dedicated to her and trying to persuade them that he was not stealing and
selling her medications. Visiting her at home so often, I told them that
she was in so much pain that she clearly wasn't getting enough
medication for effective relief. I also told them that even if I was
wrong, and Jose was selling some of her medication, we still had to treat
Maria's pain.
I encouraged the team to ask Maria and Jose to be as honest as
possible about the pain and the medication. But I warned them that they
had to be realistic when they worked with people who had used drugs.
Terrified by pain or even the chance of pain, patients might not always
give an honest answer to doctors.
Reflections
Physicians have a hard time treating pain, and studies have repeatedly
demonstrated undertreatment of acute pain (Marks &
Sacher, 1973), cancer pain (Grond et al.,
1996), and pain in AIDS (Breitbart et al.,
1996). Racial and ethnic minority populations are at higher risk
for undertreatment of pain (Bonham, 2001; Morrison et al., 2000). Patients with current or past
substance use who are medically ill and in pain are doubly disadvantaged
and most likely to get inadequate analgesia (Portenoy
et al., 1992). Physicians have negative feelings toward them,
assuming that their complaints of pain are routinely exaggerated to get
opiates in order to misuse them. Unable to rely on what these patients
say, physicians are forced to make their own decisions about how much pain
the patients are in. It is estimated that only 15% of HIV-infected
individuals receive adequate therapy for their pain (Breitbart et al., 1996). Irrespective of drug-use
history, pain should be routinely evaluated and treated based on what
medically ill patients report (Breitbart et al.,
1997)
Pain and addiction are not mutually exclusive problems. Severe pain
needs to be well treated. And addiction treatment requires realistic
goals. “It took you thirty years to become an addict, now its not
going to take a week to get everything right.” The work has to be
infused with an acceptance of ongoing use, and of
relapse—“they stop coming in … then come back
in.” (Rahimian & Pach, 1999, p.
2002).
4. Deepening the Relationship and Providing a
Lifeline
I kept in close contact with Maria over the next couple of months,
visiting regularly, sitting and talking in English and in Spanish. I told
her that she was an amazing survivor of the streets, expressing my genuine
respect and telling her how much I was learning from her.
I spoke with her doctors frequently, communicating her concerns
and advocating for her care. She suffered from periods of depression and
felt comfortable enough with me to let me know about suicidal thoughts. I
brought our psychiatrist to the hotel to see her, and with antidepressant
medication added to our counseling, her spirits improved.
I also did things that simply needed doing, sometimes calling the
pharmacy to deliver medication so that she would not run out, sometimes
picking up prescriptions and bringing them myself when Maria was in pain.
One day she said, “If it wasn't for you, I don't know
where I'd be or what might have become of me.”
Reflections
Many patients struggling with advanced AIDS in the inner city are
isolated, often having burned all their bridges through active addiction.
At times they may feel that living is useless or consider suicide (Angelino & Treisman, 2001; Schwartz & Selwyn, 2001). The effective
intervention is to listen nonjudgmentally, and to “empathically
witness” their struggle (Kleinman, 1988;
Erlen et al., 2001).
Patients whose first language is not English may be able to convey the
facts, but not the emotional context, of their experience when they
communicate in English. This can happen even if they have acquired some
degree of English fluency. To capture the depth and breadth of their
feelings, it is imperative to conduct conversations with them in their
primary language. “Un poco de espanol” on the part of
providers, and “un poco de ingles” on the part of the patient
just won't do (Hardt, 1987). Several
efforts in community outreach to Spanish-speaking populations have
highlighted this issue by referring to their fluently bilingual CHWs as
“promotoros” (Warrick et al., 1992;
Castro et al., 1995).
As the literature reports, CHWs serve as a support and lifeline to
clients:
“CHW's keep clients alive…. [They
help] clients comply with their medical regimens….
[Clients] noted that the mortality benefit derives from the
CHW's supporting [them] during periods of psychological
stress, which enables the clients to avoid destructive coping behaviors,
such as abusing drugs or suicide” (Felix-Aaron et al., 2002, p. 91).
Health Promotoros have been described as “part teacher, part
friend, part advocate … not only did the women find the educational
aspects of the program new and helpful, but also the caring, warmth and
encouragement offered by the promotoros was a lifeline for many”
(Warrick et al., 1992, pp. 24–25).
Critical components in developing the therapeutic alliance are respect
and trust. Respect is demonstrated by repeated home visits that indicate
acceptance of patients and their surroundings. Trust is built on a track
record of availability (by pager or phone, when feasible) that matches
team promises.
5. Advocacy and Bridging to Doctors and the
System
Maria landed back in the hospital, infected and in further pain.
She rejected a nursing home, telling us that her tiny, stifling,
bug-infested room in the basement had become her home. She also rejected a
home health aide because she didn't want a stranger in her house, and
insisted that her husband was taking care of her.
The medical team was large and changed over the course of the
month. With so many strange faces, Maria became increasingly nervous and
suspicious that she wasn't being well cared for. I was a steadying
figure for her. When I spoke with her doctors and accompanied them on
visits, she grew calmer and somewhat more trusting.
The team decided to send Maria home with a PCA pump, which had
finally gotten her pain under control. But there were major obstacles.
Maria was undocumented and had no insurance to pay for outpatient and home
care. I pushed the social workers, and together we finally got Maria her
first temporary Medicaid card. At the last minute, VNS almost canceled the
arrangements when they insisted that Maria have a phone in her room, or
they wouldn't provide home care. Finally we got a phone installed in
her SRO room. The PCA pump was delivered and the nurses were able to begin
to control her pain.
Reflections
Advocacy activities and scheduling an array of appointments often
dominate the CHW's schedule. Patients need someone to help them
negotiate impersonal bureaucratic systems and seemingly
“foreign” cultures (social service agencies, treatment
facilities, providers, and case workers). With limited English literacy,
they may need help completing the forms required for assistance (Morse et al., 1996; Warrick et al.,
1992).
6. Bridging to the Family
Maria's husband, Jose, her two daughters, and three young
grandchildren were the key supports in her life. In addition to meeting
with Maria and her family, I made a point of finding times when I could
sit down with each family member separately.
Maria's husband, Jose, clearly loved her. I saw it in how
dedicated he was when they were together, and how he spoke about her when
we were alone. I spoke to him as one man who had coped with devastation to
another.
I met with her daughter, also named Maria, who lived nearby with
her husband and two children in a family shelter apartment. They were
working but struggling to make ends meet. Maria came to her mother's
room almost every day and cared for her. She looked to me for help in
understanding why her mother was dying of AIDS in the HAART era and for
support as she saw her mother growing sicker and sicker.
Maria's other daughter, Rose, had escaped from the
“hood” and was starting to make a new life, with her husband
and new baby, in a little house an hour north of the city. Maria beamed
with each mention of her daughter and granddaughter, and spoke with joy of
the several times she had been able to travel to their house.
I talked with both of Maria's daughters like a father, and
like a brother, as we shared the trials of her mother's illness. And
with Rose, I shared her journey up and out of the Bronx, the pride and
guilt she felt, all of which I knew only too well.
Reflections
Making strong connections with the most important family members is
critical. Family members are both the key to the patient's peace and
palliation and patients in their own right, in need of support during the
dying process and afterward, during their mourning (Williams et al., 1997).
The most effective CHW is able to relate creatively and flexibly to
each family member. In an outreach program to the mentally ill in
Baltimore, a set of “family outreach workers (FOW's) …
mothers of mentally ill people,” were identified and trained to go
out into the inner city and work with patients and their families. The
FOW's were able to be “understanding mothers” to patients
often alienated from their own mothers, and were also able to be
“fellow mothers,” empathizing and providing a healing
experience and a bridge (Dixon et al.,
1998).
7. Family Reconciliation, Death, and Bereavement
Maria remained in her basement room with her husband. As her AIDS
advanced, she grew thinner and weaker, spending more and more time in bed.
She finally agreed to accept a home health aide, and her nurses and
doctors came regularly. She was comforted by Jose and by her daughters,
who were by her side frequently. I helped Maria and the family to accept
Maria's disease and approaching death and to focus on helping her to
be as comfortable as possible. Her pain was well controlled as I went away
for a week's vacation.
When I returned the following Monday, there were two messages on
my voice mail. The first was from Maria's primary care doctor,
letting me know that Maria had died. The second was from Rose, asking me
to call as soon as possible, saying tearfully, “We need your
help.” I knew how poor this family was, and realized that I
hadn't discussed funeral arrangements and expenses with them. Taking
a deep breath, I picked up the phone and called Rose. I could hear the
pain and relief in her voice as I encouraged her to tell me the details.
She and her sister and Jose had all been with her mother as she slipped
away that Saturday, dying comfortably, asleep and in no pain.
Rose then told me about the family's struggle to come up with
the money to pay for a funeral and burial. Sadly, she told me that they
had finally decided to cremate her mother, because a full funeral, coffin,
and burial plot were far beyond their means. I told her that I would see
her at Maria's wake later that day.
I wished that we could pay for the funeral, but knew that the
program didn't have the money. Calling our administrator, I was able
to get authorization to have a flower arrangement delivered to the funeral
home. When I got there, I saw Maria lying in a plain wooden coffin, in a
small room, surrounded only by her husband, daughters, and grandchildren.
Our flowers were beautiful, the only adornment in that barren room.
Maria's doctor came, and was soon deep in conversations with a hand
on Jose's shoulder. No longer “the addict” the medical
team had feared, he had finally come to be seen as Maria's loving
husband.
Reflections
As patients grow sicker, the HIV Palliative Care team maintains closer
contact and makes them as comfortable as possible. Contact with family
increases, for emotional support (Koenig et al.,
2001) and help with concrete issues. Families need help in
practical planning for the patient's death at home, and in making
affordable and realistic funeral arrangements. Advance planning for the
family's future, including the disposition of any children, is
critical.
Patients are encouraged to discuss issues and/or secrets that
would help bring closure to their lives. Although reconciliation and
resolution of relationships can and does occur for some, for others it is
an unrealistic goal, and the events of their past lives complicate an
already emotionally difficult situation.
Attending the wake and funeral and continuing to work with families,
in their homes or by phone, in the months after the death are the final
part of the work.
Experience and Perspective of the Community Health
Outreach Worker
In order to do this work, you must go in with a mindset not to be
surprised by what you see, feel, or even smell. You must be nonjudgmental
and compassionate, gentle yet direct when needed, and above all, patient.
It requires a feeling, a certain style that is second nature because of
life experience, “having been there and done that,” which is
not taught at any school. Many individuals that are street-wise are good
manipulators and sometime only another “good manipulator” can
see through that. In time I learned how to be effective as a professional
and something of a friend, to keep a balance.
Being fully educated about the virus, modes of transmission,
OI's and medications was critical, as was knowing about drug
addiction. I learned to be able to pick up on pain, even when patients
were afraid to say so, and to understand its treatment.
I believe death means going somewhere peaceful where there are no
worries, and this has let me convey something comforting to loved
ones.
Following the patients wherever they were was quite challenging.
I've been to more hospitals in one week than I had previously seen in
all of my life. At first, dealing with hospitals and health professionals
created a problem. Maybe it was because I was a young Hispanic who
didn't dress like most of the staff, or maybe they felt that because
I wasn't a “doctor” they had no obligation to me.
Whatever it was, I stayed calm and found a way to get my answers and
accomplish what I went there for. After some time everyone everywhere got
to know me and I was respected and treated as a professional.
Reflections
Health care teams often seek out potential CHWs through community
organizations like churches. They are looking for people born and bred in
the target communities, but people who stand out. Strong candidates often
have more education and have one foot in their communities, but one foot
out. They are fluent in two languages, two cultures, two worlds—the
world of the street and the world of downtown—the world of doctors,
lawyers, and businessmen (Dixon et al., 1998;
Rahimian & Pach, 1999).
Even more importantly the CHW must stand out in energy, initiative,
and interpersonal skills, have a way with people, an intuition to know
when and how to “go with the flow” (Morse
et al., 1996).
Gladwell (2002) states that the success of
any social change “is heavily dependent on the involvement of people
with a particular and rare set of social skills” (p. 33). He
describes the three critical qualities/types of people who are capable
of effecting change: “connectors,”
“mavens,” and “salesman.”
“Connectors … their ability to span many different worlds is
a function of something intrinsic to their personality, some combination
of curiosity, self confidence, sociability, and energy” (p. 49).
“Mavens have the knowledge and the social skills. What sets mavens
apart, though, is not so much what they know but how they pass it along
… mavens want to help” (p. 67). “Salesman … with
the skills to persuade us when we are unconvinced of what we are
hearing” (p. 70).
One health team found gifted CHWs by asking potential candidates
(identified by community opinion leaders) to organize and run focus groups
in their communities. They offered jobs to the ones who demonstrated
remarkable ability to connect with participants, to move them to change
(Dixon et al., 1998).
Impact of the Work on the CHW
The gratitude of people who have never had a stranger really care,
stay in the trenches with them over time, do concrete things for them, is
something I carry home every day. There was a lesson to be learned from
each and every one of them. For me it was a great experience, though it
was not an easy thing playing many roles at different times, with clients
and with professionals.
A relationship between the patient and oneself can build so well
that I become emotionally involved and wish I could do more to relieve the
suffering. When you see a child or mother that you have become attached to
looking hopeless as their loved one is dying, it can be heartbreaking and
overwhelming. Growing extremely attached is not a good thing, and one must
learn how to separate emotions. Only sometimes the heart gets involved.
Many times in my dreams I saw the faces of my patients; some became more
than just another case. At times I found myself remembering the jokes the
patient shared, the smiles they showed, the strengths they had, or the
courage and uniqueness they displayed.
As a professional you must know when you are becoming overwhelmed,
keep a balance, and be able to share with the team, family, and friends,
and seek your own therapy.
Reflections
Warrick describes how the “health promotoros experienced
increased satisfaction in helping others … increased self esteem
… increased social status and prestige in their communities
…” (Warrick et al., 1992, p. 25).
But this is a complex process. Beyond the stress of becoming emotionally
involved with dying patients and their families, the CHW has to
“negotiate a variety of roles interpersonally and
intrapersonally.” In the same day, sometimes in the same few
minutes, they “talk like the ‘homeboys,’” and then
turn around and have a “business-like manner with health
professionals.” The CHW experiences the stress and strain, the
cognitive dissonance, of living and working in two different worlds, and
fitting imperfectly in both. He is not in the same place he began in the
community; neither is he a full-fledged professional like others on the
palliative care team, with their higher education and degrees (Elwood et al., 1995).
