A person who is sleeping in a place not meant for human habitation, in an emergency shelter or is housed but losing their housing within the next 14 days and has no supportnetwork to remain in housing. People who are fleeing DV and have no other residence. (National Alliance to End Homeless 2012).
It is estimated that 2.3 to 3.5 million people are homeless in the US (Aron L, Lee E, 2011). In VA the Virginia Coalition to End Homelessness, (VCEH) surveyed 1,332 individuals: 557 or 42% were identified medically vulnerable 1,929 emergency room visits in past 3 mo. (1,325 per visit), estimated cost $10.2 m/year 1,070 patients became inpatient after ER visits in one year ($21,000 per admission), estimated cost, $22.47m/year.• The VA homeless are 3-4x more likely to die prematurely than other Virginians• In Richmond 46.2% of the homeless reported a long-term disability, 54% reported a mental health disability.• Between 10- 20% of total US homeless are Chronically Homeless.
Conflict theory (Netting, Kettner, McMurtry, & Thomas, 2012) provides a view of the homeless population and their need for services. In this economic downturn, funds are more difficult to come by for most social programs. Funding for homeless services is not adequate. In many social arena’s you may have the public assisting in the fight for minority rights and services. This does not usually happen with the homeless. They are seen as unworthy; substance abusers and money funneled their way contributing to their substance use. The policymakers can continue to overlook this group and there will not be loud voices complaining and forcing them to action or even helping to make the problem visible. Policymakers many times focus on how to keep them invisible and/or enact policies that move them somewhere else. An example would be recent legislation in Henrico County not allowing loitering on the medians in that county. The policy is targeted at the Homeless population, although it doesn’t explicitly state that and uses the language of safety. They could have done something to help those in need. Instead, they want them invisible in Henrico County, and have just moved them to Richmond City who has no such policy.
An unaccompanied person living in a place not meant for human habitation (for example the street) or in an emergency shelter (HUD 2011). The person must have been continually homeless for 1 year or more, or have had at least four episodes of homelessness in the past three years. The person must have a disabling condition: Diagnosable substance use disorder Serious Mental Illness Developmental Disability Chronic physical illness or disability A combination of the above This must prevent an individuals ability to work or perform more than one task of daily living (NOFA, 2010).
There is an estimated 124,000 chronically homeless (CH) in the US. (NAEH, 2011) As the table shows 17% of the Virginian homeless are CH (NAEH, 2011): 63% of them live on the street and more than 50% of services were used by them. (111th Cong., 2009). They often cycle in and out of homeless shelters, jails, hospitals, treatment programs, the ER, MH services, veterans’ services and criminal justice resources. CH’ use a disproportionate share of shelter beds and other public resources. The high use of the emergency department can be explained by the lack of primary care clinics and other medical care entrance points. Many go to ER for basic needs such as food, shelter and clothing. (Kushel MB, 2001)
The CH are extremely difficult to serve. They have often had a bad experience with social services agencies and are therefore resistant to accepting help. They have worked out that most services are not appropriate for them so there is little point in trying to engage. In many cases homeless services are not physically set up to accommodate those with high needs (physical, co-morbid disorders etc.). Most shelters don’t follow all the ADA guidelines and very few have medical professionals on hand. Jahmel (Participant 1, 2012), explained that it was impossible to stay in shelters as he could not sleep in a room with others, let alone a room with no doors. He says he feels less paranoid (a result of a Dx of schizophrenia) sleeping alone in an alleyway “away from the undercover agents”. Bill73 in VA is a bill that is currently in the stages of being passed. It will require those are in need to take drug screenings in order to receive public assistance (Hankerson, 2012) What will substance abusers do when they cannot get public assistance
The Chronically homeless typically have little or no social support and sparse contact with their families (usually due to ties that have been torn as a result of their morbid, often co-morbid disorders). Ricky (Participant 2, 2012) describes his social life as “always busy”, he actually complains that he is rarely left alone to think and admits to preferring solitude. Yet every time one comes across Ricky he is in company. It is not unusual to have a high level of contact with others as a CH individual, however that contact is usually with other CH’s. Although limited social stimulation is gained from these relationships as Ricky states: “Papi. they more likely be takin’ my check than let me have a puff of their cigarette”.
The table shows how a CH person will cost the community much more before she/he is housed. Keeping people homeless vs. housing them has a huge benefit to the community (more on this this later). This has renewed VCEH’s effort to end homelessness, but unfortunately for the CH’s, the majority of the focus and financial aid is being dedicated to work towards preventing homelessness and rapidly re-housing the recently homeless. Case Manager positions for the homeless are being cut in favor of bringing on Community Case Managers to work with those at risk of homelessness (OPEH, 2012). While this is an important part of ending homelessness, it neglects to address those that are already on the street and who are therefore at higher risk of lethality. The “Housing First” model (again described later) faces a huge barrier of a severe lack of housing, and waitlists that can be several years long for Permanent Supportive Housing.
It is important that any interventions to assist homeless people in Richmond, Virginia include the voice of the target population. More than getting to know them and their needs, actually including them in the solution (Netting, Kettner, McMurtry, & Thomas, 2012). In determining community characteristics it is important to note that while most people consider the homeless population as homogenous in that they are drug abusers and/or mentally ill; within the mentally ill and substance abusing population of homeless people they are all very different and have different experiences that have brought them to homelessness. This is important to know in coming up with a solution or even acknowledgement of the problem. These differences within group are important in determining how the subgroups of homeless in Richmond, Virginia define their boundaries, strengths, issues, problems, and values (Netting, Kettner, McMurtry, & Thomas, 2012).
Netting, Kettner, McMurtry, & Thomas (2012) discuss the importance of understanding how oppression and discrimination has contributed to the problems of this group including their homelessness as well as how it continues to disenfranchise them and limit services available. The community structure for the homeless population is mostly negative from their point of view. The homeless population does not have representation and voices to advocate effectively for themselves. Most of the advocacy and interventions are imposed by others and most often based on making them more invisible as opposed to truly assisting them. There is only one program in Richmond, Virginia that assists this population, that is Virginia Supportive Housing. The homeless population while they have rights afforded them by laws, they don’t always work out that way in reality. Sometimes providers are not respectful, nor compassionate with their care. They may not provide necessary treatment because the person is homeless or provide a treatment that requires follow-up beyond the capabilities of a homeless person. An example would be a lifesaving surgery in a hospital, then releasing them to the street, where infection will set in without a clean, stable environment to recover in. Are they supposed to move? will they pull out stitches? etc.
The “vulnerability index” is the new trend in homeless services across the country (NAEH, 2012). It is not in place in Virginia yet, but it is being discussed and plans are to put it in to action in the future. Richmond was the first city to join this state wide initiative. (Jean A, 2010) Instead of traditional outreach services, the index will act as a survey, to collect data from the CH in order to rank them on a scale of vulnerability. i.e. Likely hood of dying on the street within the next 12 months This tool frequently finds that the CH at highest risk, have been homeless for over 20 years. It is currently being used in NYC and LA, (Jean A, 2010). Focusing on the most vulnerable, communicates that they are NOT beyond hope.
The Housing First Model is unlike the majority of homeless housing services, individuals are provided with housing even before they are clean or engaged in services. Once they move in, they are then provided with support: Sub. Abuse treatment MH treatment Education Job training Placement assistance Benefits assistance etc. The Intensive Community Treatment Team ICT in Fairfax County advocates for housing first for their clients (even though in reality it means that there often is a wait that lasts several months). However, once in their home, the clients have been shown to have a greater success of holistic improvement with the continued support of the multidisciplinary team (Ffx Co. Gov, 2012)
Since being housed by the ICT team, Pat (Participant 3, 2012) has established medical care, got in contact with his family and has stopped abusing alcohol, he is stabilizing with help from the ICT Team, taking steps to deal with PTSD from Vietnam, abuse and 8 years in the woods. In Richmond programs such as Home Link, a program run by Virginia Supportive Housing, is putting the housing first model in to action. Home Link is helping people who are at high risk of lethality to survive, receive support, compassion and hope, even if in their last days (Fisher, 2012). In the early 2000s, the Millennial Housing Commission and the President’s New Freedom Commission on Mental Health, estimated that approximately 150,000 new units of permanent supportive housing were needed to end chronic homelessness. Since then, approximately 60,000 units have been created through HUD’s McKinney-Vento Homeless Assistance Grants. This leaves another 90,000 still to be created, a task that will take several federal policies to be put in place.
Studies have shown that there is a notable health improvement in CH clients who have been housed in supporting programs. The following is an excerpt from a recent study, it shows the impact of permanent supportive housing on homeless, HIV-positive individuals: “In this randomized trial, we found that housing homeless HIV-positive individuals and providing them with intensive case management can increase the proportion surviving with intact immunity and decrease overall viral loads. The 63% relative increase and 21% absolute increase in survival with intact immunity is clinically meaningful. For every 5 patients offered this intervention and for every 3.25 patients provided housing in a program agency, 1 additional patient will be alive with intact immunity.” (Buchanan, 2009)
Hospice is a medical specialty, focused on providing care at the end of a persons life. Helping them to be comfortable and to manage their pain so that they can maintain dignity in their passing. Hospice focuses on caring and not curing an illness, the person must have a terminal illness that even aggressive treatment will not cure. Hospice uses all the skills of a multidisciplinary team that provide the physical, psychological, social, spiritual and other needs that are typical of the last stages of life and during the dying and bereavement (see diagram).
It also provides numerous services to help loved ones come to terms with their grief. In most cases the care is provided in the persons home, free standing hospice centers, hospitals and nursing homes (NHPCO, 2012) Uninsured, terminally ill persons who are deemed by two Dr.’s to have 6 months or less to live are eligible for Medicare Part A (if they are US citizens or legal aliens). They are then tasked with finding a palliative care provider that is approved by Medicare. Informed consent must be given by a family member if the person is unable to do so (Alexandra, Arenella et al, 1999)
In 2010, an estimated 1.581 million patients received services from hospice care. This included: 1,029,0001 patients who died under hospice care in 2010 292,7591 who remained on the hospice census at the end of 2010 (known as “carryovers”) 259,0001 patients were discharged alive in 2010 for reasons including extended prognosis, desire for curative treatment, and other reasons (known as “live discharges”). Over the past decade, the hospice industry has been marked by substantial growth in the number of hospice programs and patients served. (NHPCO, 2012) The proportion of hospitals that offer dedicated palliative care programs has grown significantly in the past decade, from 15% in 2000 to 25% in 2003.(Morrison, 2002). Academic medical centers, Veterans Affairs hospitals, and Catholic hospitals are more likely to have palliative care services than nonprofit or public hospitals. Homeless patients are more likely to receive care in public hospitals, they are less likely to die in settings that offer palliative care services.
As per the above graph, the number of Medicare patients is increasing over time, this could be due to many factors: Medicare is being made available to more people, including the homeless in need of palliative care. There are more people surviving to an older age, where hospice is more greatly needed. There are more Hospice care providers that accept Medicare: In 2010 there were more than 5,000 Hospice Care organizations in the US, over 220 in VA alone.
Traditional palliative care hospitals may be reluctant to accept CH patients, due to behavior or lifestyle concerns (Gelberg, 1992). Ricky is in adult incontinence pants now, but with out them, and without the ability to make it to a rest room quickly on the street, he said he always felt shame asking for help. It was not unusual for a member of the Social Services team to show “disgust” at how he presented: “it ain’t my fault, I get anxious and”, he motions with his hands that he would lose control of his bowel. “I wonder why hospice visit for such a short time, is it ‘cos I don’t understand what they are saying, or because I’m just a homeless freak, it makes me depressed and I hate crying” he says as he wipes tears from his eyes.
Even with terminal illness, some CH remain in shelters due to the familiar environment, or in order to keep using tobacco, alcohol or drugs. For many this is a form of self medicating for their co-morbid conditions, regardless that a large majority suffer from liver complications and are actively hastening their death. Ricky: “I got real good at sneakin’ it in to shelters, the truth don’t set you free, papi, I need my jungle juice to function, I’ve been to so many rehabs, detoxed over and over. I know its not going to help my liver, but what I got to live for? Am I going to give it up before I croak?- I don’t think so!” (last part said very emphatically) Adherence to treatment in this population is often difficult, resulting in symptom intensification and the need for crisis services (Podymow, Turnbull and Coyle, 2006) Many professionals offer potentially curative surgery, if the patient stop abusing substances. The reasons to refuse surgery are often not explained to the patient, studies have shown that often the rationale is both medically and ethically inappropriate. For example, from the clinical standpoint, while heroin and cocaine use can complicate anesthesia, neither is an absolute contraindication (Hernandez, 2005).
It is not infrequent that a terminally ill CH patient is under prescribed pain medication at the end of their life. Many times opiate addicts go through withdrawals after having been admitted to the hospital. Heroin withdrawal, for example, can be prevented with opiate replacement therapy (methadone, levomethadyl acetate, or buprenorphine). Physicians often admit that the fear of investigation, sanctioning, and even prosecution for prescription of opioid analgesics can be a barrier to appropriate treatment of pain (Model Policy for the Use of Controlled Substances for the Treatment of Pain, 2004). Living on the margins of society can widely change priorities, elevating some concerns while at the same time lowering other essential priorities of self care. That being said, there is no reason to believe that a CH at the end of life would not desire the same relief from symptoms that a domiciled person would.
Medical respite describes short-term shelter with basic medical services for homeless persons who are too ill to function on the street but who don’t need hospitalization. Respite care models range widely, from homeless emergency shelters with part-time nursing care to extended-stay facilities with physicians available. Respite availability decreases subsequent hospitalization days. (Salt, Kuhn, 1998) Although most respite providers recognize the need for end- of-life care, only a few programs address this issue. Unfortunately, most programs do not have sufficient staffing to attend to the needs of patients nearing death (David Buchanan 2006). The Greater Richmond Homeless Respite Program provides 24-hour, short-term care to homeless men and women with acute medical and mental health conditions but is not equipped to care for those nearing the end of life.
In a recent study it was shown that 60.7% of CH in hospice care were in contact with their family, although this is considerably higher percentage to the contact before a family learns of a terminal illness it does not reflect the nature of the relationship. (Podymow, Turnbull and Coyle, 2006). It is relatively common for doctors in hospitals to make decisions for patients with no family present. One third are known to have turned a ventilator off in the absence of a next of kin (Karp and Wood, 2003). Jahmel is not in contact with any of his family, even though they live close by in Richmond. Unlike many of his friends one of the major reasons he left home was to get away from drug use. Dying at home is not a realistic goal for the CH at end of life, not only do they often lack the literal shelter of a home, but as importantly they also lack the companionship and social connections often associated with stable housing.
Having spent years living on the street, it is understandable that CH may not find it an easy task to accommodate to the rules and restrictions found in skilled nursing facilities. They are often at the end stages of their lives at a younger age than the general population and therefore often not comfortable receiving care in facilities that cater to geriatric populations when they don’t view themselves as elderly. With inappropriate care and housing, a large number of CH are found dead in public places, others are found in residential dwellings, at home, arrive dead to the emergency department, or die shortly afterward (Hwang, 1997). An article in the Reston Patch in December 2011 (a news blog for a city a few hours north of Richmond) reads: “Police were called to the Springs apartments late Tuesday night after residents of the neighborhood smelled a strange odor coming from a basement storage area. The body is believed to be an adult male. Police said they do not yet know the mans identity or how he died.” (Goff, 2011). The investigations were not extensive around this case, after it was discovered that the body was that of a CH elderly gentleman.
Song et al. (2007a) conducted a study to identify experiences and attitudes about death and dying by homeless people. Many homeless people as a result of their life experiences think that any care they receive will be substandard, this includes how they feel hospice and palliative care will be provided. Song et al. (2007a) showed that homeless people have experiences of early loss in their lives that have led many to have a fatalistic attitude. Homeless people had often had multiple experiences with death, including personal experience with death or that of a relative, friend, or street friends. Frequently their experiences involved traumatic and anonymous death, especially of street friends. It was also discovered that many of the homeless population have omnipresent thoughts of death because it is a part of their everyday lives. The homeless live in fear of daily death which has shaped their coping mechanisms. Many of the homeless people in the study were emotionally detached and isolated as a result of living a life with personal life-threatening situations and their daily fear of death (Song et al., 2007a). Two contradictory styles emerged: 1. Some homeless people were a lot more careful of their behaviors and lived in survival mode and attempted to find as much safety in their situations as possible, including the behaviors they engaged in. 2. The other style produced more risky behavior. Those in this group engaged in risky behaviors and believed the behaviors were reasonable based on their situation. This group perceived death as unavoidable, therefore it did not really matter what they did. In fact many of the homeless people stated that they engaged in risky behaviors such as drinking and drug use to forget about the unavoidability of death as an everyday eventuality (Song et al., 2007a).
CH’ emerging themes in attitude toward end of life (EOL): Loss of control Belief that services are not required. Belief that interventions were imposed and not wanted. Desire for compassion at EOL from individuals (widely defined by different CH as friends from the streets to service providers), (Song et al. 2007b) Suggestions from CH: Education to Homeless providers for more culturally sensitive interventions and care. Advance care planning and documentation to remain in control and have their wishes known and respected. Hospice populations that are suited to this populations special needs (Song et al. 2007b).
If adequate services are created there will be difficulties in linking the population with them. How can you coordinate services for a population with limited communication means? Can you call them to inform them of appointments if that information is not available at discharge? Will the provider they are referred to accept the homeless person the way they present for care? Due to negative past experiences with the limited providers in the area, will the homeless person even attempt to access a service that has not worked out in their favor previously?
Considering the heavy burden of disease including physical illness, psychiatric conditions and addictions among the CH at end of life. If palliative care could be brought to the shelter environment it could provide effective end-of-life care and as discussed earlier, potentially substantial cost savings. Ricky explains that most hospice programs that had availability and accepted Medicare were far away from home. Ricky is blind in one eye and illiterate, so being in familiar surroundings and able to orient himself was extremely important to him. Also the fact that his friends had no means to get to see him if he moved away was another fear of his: “I get very lonely, papi, a blonde would be nice, but my friends are all I got”. He was offered a place at Josephs house in DC, but turned it down, because he could not cope to “be lost in my last days”. Ricky is one of those lucky clients who were able to get in touch with his family and move in, with the care of hospice. Still he often complains of being bored at home in a room on his own and often contemplates the streets as a better option. One time he walked 4 miles back to the shelter (a man in the last stages of liver cancer) to see his friends. He also feels guilt at being housed: ”last night there was a storm, and as I looked outside I thought of my crew”. He systematically recalled all the safe spots (that would be taken first), the ones that would gather puddles, the ones where water would run through etc.: “I kept thinking they probably need an extra blanket and tarp tonight).
Increasing low-barrier shelters that not require guests to be sober or participate in programs to receive aid could increase the number of CH seeking shelter, especially those in need of palliative care. At present Richmond offers only one overnight shelterthat provides low barriers for entry to homeless men, even if they are under the influence of drugs and/or alcohol. Most of Richmond’s shelters will not admit these individuals. The shelter is within the same setting as the recovery program. Here the active alcoholic or addict has an opportunity to come into contact with his peers who are in recovery.
Some studies have found that homeless persons expect their deaths to be sudden and violent (Song 2005). Because of this, they may be less willing to discuss end-of life- planning. A New York Times article from December states: “The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.” (Pear, 2012). The question is, will the CH take advantage of this? The “Five Wishes” (Aging with Dignity, 2011) is a booklet that is being made more widely available. It it systematically goes through some important end of life scenarios and gives the opportunity for a person to make decisions about their treatment in advance in the event that in the future they will be cognitively unable to do so themselves. It is extremely important that this is made available to the CH in end of life care.
Harm Reduction is a concept that is being practiced world wide to promote health and dignity among drug users, those involved in the sex trade and their communities. It is designed to reduce harmful consequences of behaviors rather than prohibit behaviors themselves. I.e. provide clean syringes and safe injection sites to heroin users. There is a Harm Reduction Coalition Group in Richmond that advocates for the advancement of harm reduction policies, recognizing that inequality and injustice increase drug related harm and silence the most vulnerable in the community (www.harmreduction.org).
The Ottawa Inner City Health Project (OICHP) A Hospice 15-bed shelter pilot program for the CH at the end of life, that was created in June 2001. Shelter provided meals, beds, a full multidisciplinary team dedicated to working together to serve the clients 24hrs a day, 7 days a week. Harm reduction was practiced, providing clean needles, safe syringe disposal. a smoking area, dispensing of 14g drinks of alcohol on demand to alcoholic clients. Results: Harm reduction and proper pain control managed by staff reduced substance use in clients, particularly the illicit intravenous drug use. Pain was successfully controlled in all 28 clients who were served and died at the program. The majority were reunited with their families, many of them had not had contact with them for many years. Clients all required considerable assistance with all daily living skills, which they received by the hospice team. Spiritual council was received by most clients. It was agreed by the researching panel that 68% of clients might not have sought care or received services, most of them probably dying homeless without symptom management. It was projected that compared to alternate locations the OICHP saved $1.39 million for the clients they served. (Podymow et al., 2006)
It will be also be important for those involved to be prepared for how stigma associated with the homeless population will impact funders and community provider’s willingness to participate in the development of a new facility. The importance of challenging stereotypes with physical examples, statistics, and education will prove to be incredibly important in educating those not directly working with the homeless population of the importance of and need for end of life care for the chronically homeless.
The writers recommend a change approach that focuses on the development of a community-based hospice program for chronically homeless individuals with terminal illness. We have chosen to focus on all individuals with terminal illness, but with a special focus on those who are too medically vulnerable to meet the requirements of shelter living or meet the intake requirements of Medical Respite. Positive results should mean that the metro-Richmond area will see: A decrease in the number of chronically homeless individuals dying on the street, A decrease in the number of acute hospital admissions for chronically homeless individuals needing long-term palliative care, An overall reduction in spending associated with acute medical care that could be managed in a community-based palliative setting.
The following goals, outcome objectives, and process objectives have been set for the program: . Goal 1
The writers and staff of the new facility, would focus on providing education about new hospice alternatives for those identified as chronically homeless with end-stage illness. Education would remain facility based and would continue on a quarterly basis, or more frequently if identified as necessary. The new facility would hire a liaison between the program and community-based agencies to ensure a central contact for questions regarding referrals, intake procedures, patient appropriateness, and community-based facility expectations after admission. .