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The Kenneth B. Schwartz Center at Massachusetts General Hospital Hematology-Oncology Department: Hope for the Homeless

Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA

Richard T. Penson, M.R.C.P., M.D., Hematology-Oncology Department, Massachusetts General Hospital, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org

	LEARNING OBJECTIVES

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After completing this course, the reader will be able to:

1. Explain the personal elements of the barriers to care for homeless patients with cancer.
   
2. Describe the personal costs and rewards of extraordinary care.
   
3. Discuss the epidemiology of head and neck cancer and homelessness.
   

	ABSTRACT

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Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded the Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient and support to caregivers and encourages the healing process. The Center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum during which caregivers discuss a specific cancer patient, reflect on the important psychological issues faced by patients, their families, and their caregivers, and gain insight and support from their fellow staff members.

A homeless man with head and neck cancer presents to the emergency room: a sad and familiar story. But this story is redeemed by his 35-year friendship with a priest, a man whose unconditional love and support became critical to the patient’s care and treatment. The patient had lived for 30 years in homeless shelters, had problems with alcohol abuse, and was notoriously noncompliant with medical caregivers. He could not speak due to his disease, was illiterate with limited intellectual capacity, and had neither a job nor a family. Despite huge and apparently insurmountable problems for the patient, the oncology team was able to carve out a package of care, successfully communicate, and mobilize a support network to allow successful completion of chemoradiation therapy. The team developed a strong commitment to his care and an affectionate bond, which very positively affected all of those involved. We discuss issues of access to cancer care, and the special problems presented by homeless patients.

Key Words. Oncology • Support • Psychosocial • Communication

	PRESENTATION

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In late 2002, a 65-year-old homeless man presented to the Massachusetts Eye and Ear Infirmary Emergency Room, accompanied only by a priest of the Greek Orthodox Church. It was immediately obvious that the patient had a cancer of the head and neck, involving the floor of his mouth and anterior tongue, clinically stage IV. The patient had significant difficulty with speech and swallowing, and increasing respiratory impairment. Due to the patient’s absolute dysarthria, the only information about his past history came from his priest, a close friend of 35 years and the patient’s legal guardian. At the time of his diagnosis, the patient was living near a warehouse, under a loading dock. The patient had become increasingly dependent on the priest throughout many difficult situations, including alcohol abuse, and frequent evictions from homeless shelters.

Staging investigations confirmed that the tumor was locally advanced, with prominent lympadenopathy and inoperable. Options for treatment included radiation, associated with a 5% cure rate, radiation and concurrent chemotherapy, with a 30%–50% chance of cure, and palliative treatments. Staff were faced with many moral and ethical dilemmas and soon developed an unanticipated bond of affection with this enthusiastic and pleasant man. His inability to communicate was made worse by initial medical interventions, which included a tracheostomy and G-tube. The staff were unsure of his intellectual capabilities, as he was illiterate as well as mute. There were significant concerns about whether he was able to make decisions about therapeutic options. It was evident that the priest would have to be involved greatly in his care as much for his role as the patient’s legal guardian as for the bond of trust between the two men.

This patient’s care was a medical challenge as much as it was an ethical and logistical challenge, and among the hardest, yet most rewarding, that I have ever encountered.

 

The particular challenges of the patient’s care caused staff to question their own abilities to know exactly what their patient wanted and whether or not they were treating him in a way that was most congruent with his wishes. The staff were also concerned that the patient did not fully appreciate the toxicity of chemoradiation therapy. Their ambivalence about pursuing aggressive treatment was compounded by their inability to appreciate his evaluation of a good quality of life and by the concern that they may be devaluing the worth of his life because he was homeless.

Due to the complex and challenging nature of the case, most of the multidisciplinary team that became involved was present at the rounds. The panel consisted of the patient’s doctors, the director and nurse representatives from Boston Health Care for the Homeless Program, a discharge planning nurse, a social worker, and the priest himself. Boston Health Care for the Homeless Program began as one of 19 Health Care for the Homeless Projects originally funded by the Robert Wood Johnson Foundation and the Pew Charitable Trust in 1985. The Program has been working to bridge the gaps between medicine and public health for more than 8,000 homeless sick people a year, mainly by integrating community-based shelter and street clinics with Boston’s teaching hospitals.

	DIALOGUE

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Physician: For me, this case became a "Schwartz case," when I recognized I was deeply troubled during the first 2 weeks, and frankly have been ever since. On a personal level, I very much look forward to this presentation today as a means of finally resolving some of my personal conflicts. This patient’s care was a medical challenge as much as it was an ethical and logistical challenge, and among the hardest, yet most rewarding, that I have ever encountered. We’ll call him J to protect his identity.

Fellow: I got a quick history from the chart—homeless alcoholic who comes in with inoperable head and neck cancer. He’d had severe mastoiditis as a child, leaving him partially hearing impaired and with limited speech. He had been noncompliant with therapies in the past and intubated for prior problems with alcohol. I confess that I walked up to the hospital floor with a little bit of a bias. I had worked in Bronx Community Hospital for several years. With a patient capable of reasonable communication, discussing the options of treatment of inoperable squamous cell carcinoma of the floor of the mouth is a challenge. Communicating with him was really difficult. We were unsure if the patient ever had any schooling. I tried to find out if he had any capacity to understand what I was saying and whether he knew what was going on. The other thing I wanted to get was a sense of how much the patient enjoyed life. I kept asking myself, "Why are we going to put this guy through torture?" He was not able to speak because of the cancer and was illiterate, only able to sign his name, so was limited to nodding or shaking his head. He was very friendly, shook my hand, looked me in the eye, and was always beaming. He did not look dejected and depressed. I sat for an hour going through the different therapies. He still seemed unsure about everything, except when I asked if he wanted me to talk to Father Andrew. To this he nodded emphatically. It became abundantly clear from that first meeting that Father Andrew was going to play a significant role in making this decision.

The most significant thing about him is his isolation, his relationship with his family is broken and he is living on the margin of life.

 

Priest: I first met the patient at a summer camp run by our parish. He told me that he lived nearby and asked for a ride back with us. Later, I discovered that he didn’t live locally, but had nowhere else to go. For 35 years, he and I have been friends. I have been his principle advocate and caregiver. Over the years, he has had a chronic problem with alcohol abuse. He was a heavy smoker. From the time he was 30, he had no relationship with his family or any other individuals. Whenever I asked him why he had become alienated from his family, he would invariably change the subject. As the years went by and the problems increased, he became more dependent on me until I became the designated payee for his benefits and finally his legal guardian. I gave him his allowance in small increments three times a week. We noticed that he had not been well and was having trouble speaking. He had a speech impediment to begin with, but it was getting worse. He disappeared for 2 weeks, causing concern, and then suddenly reappeared, and his condition had deteriorated dramatically. I was very alarmed when I saw him. He said he had an infection in his mouth and had been to the dentist. He waved a prescription bottle in front of me, and I assumed he had been checked out. I should have known better. I could see he was going downhill rapidly and made an appointment with an oral surgeon who sent us to the Eye & Ear Emergency Room.

Nurse: The most significant thing about him is his isolation, his relationship with his family is broken and he is living on the margin of life. He’ll confabulate compliance, like when he stuck that pill vial in your face as if to show he was doing the right thing. I think many people tell us what they think we want to hear, whether or not they will actually do it.

Priest: Over the years, I have arranged housing for him on numerous occasions, but he has continually been evicted. It was only recently that I discovered that at the onset of his illness, he was living under a loading dock by a warehouse.

Social Worker: The social workers and the discharge planning nurses work incredibly closely together, especially on a case like this, where there are multiple and complex issues. I met him and shared the concern of everyone that we did not want to do something to this gentleman without him being able to comprehend on some level what was happening. He faced many challenges, yet was able to cope because he had a basic understanding that he had Father Andrew to guide him as he made decisions. He understood that he couldn’t comprehend all the details, but also knew there would be help from Father Andrew and from the hospital staff who were treating him very kindly. One of the areas we talked to him at length about was that, once it was decided he would have radiotherapy and chemotherapy, he would have to live somewhere and could not go back on the streets. He accepted that. We worked very hard to find a facility where he could go that was within his adopted community so that Father Andrew and the bridge nurse and the people in the church office could be near him. Father Andrew set up a travel program to take him to and from his treatment. I think the biggest thing for us was learning to redefine family, which we all know on some level, but although he did not have a family, he had the family at the church—he had Father Andrew and all the people in the church. It is interesting to note that J was not a Christian, but in fact was Jewish. The Eye & Ear also became his family. He let the MGH doctors who were going to treat him become family. He really had such trust. It’s hard not to support with that attitude.

Priest: The final consultation and decision making involved the patient, myself, and a friend who is a doctor, another member of our parish, who did not speak but acted as a witness. We had a consultation with J in the room with everyone present in which they explained to me all of the issues, treatment options, and the likely outcomes. I then asked everyone to leave the room and spoke to the patient. He did not speak. I explained that option 1 was essentially to do nothing but just to have palliative care. I explained he would be comfortable and he nodded that he understood. I then explained option 2 and described it in excruciating detail: what the chemotherapy was going to do, what the radiation was going to do, that he might feel some days like he wanted to die, that he might never speak again, he might never be able to eat again, that he was going to keep the G-tube. I then asked if he wanted option 1 or 2 and, after only a few seconds, he decided on option 2. I firmly believe he made the decision.

The homeless issue is a logistical nightmare and always daunting, but underneath that, it is a situation that we are all familiar with: a person struggling with cancer.

 

Physician: I began to feel better as a professional when this consent was finally obtained. In limbo, I was worried about what was the right thing to do ethically, what was appropriate for the situation, what this gentleman could endure, how was I going to obtain informed consent, whether I could really get it from the patient—thumbs up or thumbs down, to what extent we should involve a legal guardian, how could I implement this during a 6-week hospitalization, and where that hospitalization would be. We had to work harder for this individual than we would for other patients.

Nurse: There must be a lot of patients with head and neck cancers that have trouble communicating verbally. I think it’s wonderful that this man, homeless or not, has managed to find a community for himself, has found people that he feels safe with, and has built wonderful relationships, for which he clearly has a great capacity. It sounds like he built relationships with all of you. Even though he couldn’t speak and was very ill, he got his point across. I think the homeless issue is a logistical nightmare and always daunting, but underneath that, it is a situation that we are all familiar with: a person struggling with cancer.

Physician: The standard of care is variable for this disease. There are several legitimate standards of care—radiation alone, no radiation and just supportive medications, pain and nutritional support, or chemoradiation therapy, and often it is a moving therapeutic target. That requires a length and complexity of discussion that I could not have with this patient. Those who know my own history may be aware that my father was a minister. I had some concerns about Father Andrew as a legal guardian because I did not know him well. I know my father made decisions on a very spiritual level and I was concerned that Father Andrew might do the same, without being able to truly feel the pain that this patient might well experience in the coming weeks. If he were truly to take the role of decision maker, would Father Andrew be able to make the same decision that a loving spouse might make or might there be some spiritual overtones that could be biasing decisions? That troubled me at the time. There was something unique about the patient because of the limitations to communication, and it also concerned me that he was not only a legal guardian, but also actually a priest. The inevitable biases troubled me. I suppose it troubled me that it also troubled me.

Audience Member: I was wondering if his social circumstances changed how you presented options to him? Was anything presented differently than if he was a 55-year-old man with a kid graduating from college in the summer, or maybe a grandchild coming—you might tell him, "There is a 50% chance that we are going to knock this thing out. We are going to get you through the side effects, which are going to be tough, but the goal is cure." Did you talk about the social value placed on this guy? Clearly, he has a social value, if for no other reason than that there are 100 people crammed in a room wanting to learn. If we weren’t sure what else he brought to society being a homeless alcoholic, he’s got a whole bunch of really bright people to think about themselves and how they deliver care.

Fellow: That is a great point. I think that, if he had been 55 with a loving wife and two kids and there was a 30% chance of a cure, we would have tried to sell him a cure. That is true. Curiously, I was trying harder to sell the same to J because I wanted to give him the chance. I think I’m guilty of trying to save him.

Physician: I did not want to have him accept a therapy that would give him horrible toxicity and then personally live with the guilt of having made the decision for him in that paternalistic way. I was very tormented.

If we weren’t sure what else he brought to society being a homeless alcoholic, he’s got a whole bunch of really bright people to think about themselves and how they deliver care.

 

Head of Boston Health Care for the Homeless Program: What struck me is the relationship Father Andrew has with this gentleman. As I hear it, it is one of unconditional love. This priest would do all sorts of things that others would not have done. That is the rarity, someone who will unconditionally accept and stick with someone. I think this is an avenue into learning how much J has to offer us. The care this priest has shown goes well beyond the normal, and the fact that we are all sitting here paying tribute to that is just stunning to me. I think it is really wonderful. That relationship challenges us.

Priest: If one were to say it succinctly, over the course of 35 years, our friendship has come to the point where we have learned to love each other. It is as simple as that. I think it was fueled by how absolutely bereft he was. He was so needy. I need to say something else that I think is very important. Everybody who dealt with him validated whatever I may have done for the patient in this institution. They called him Mr. ..., used his name, and treated him with the greatest possible respect.

	DISCUSSION

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Despite the title, this article is concerned with homeless people.

Epidemiology of Homelessness
The United Nations defines homelessness in two different ways. ‘Absolute homelessness’ is the condition of people who do not have physical shelter and sleep in places not intended for human habitation. ‘Relative homelessness’ describes the condition of those who have shelter, but which does not meet the basic standards of health and safety. In health-related research, the term ‘homeless people’ includes those who are sleeping in shelters for the homeless and those who are absolutely homeless [1].

Over a 5-year period, 2%–3% of the U.S. population, approximately 5-8 million people, will experience at least one night of homelessness. For the majority of those people, the experience is short lived, often caused by fire, water, or a natural disaster [2]. However, for a significant number of people, as many as half a million, ending homelessness proves to be much more difficult. One study, which examined a homeless group over a 2-year period, found that approximately 10% of the group was homeless on a long-term basis [3]. This was significantly associated with mental illness and substance abuse.

Access to Care
This group of individuals provides a complex challenge for the medical world. The homeless population has a much higher rate of ill health than people in stable housing, with studies reporting the prevalence of homeless adults with physical illness at 33%–50% [4].

In 1998, 33 million U.S. adults aged 18 to 64 lacked health insurance. This figure represents nearly one-fifth of the nonelderly population [5]. Studies have consistently shown that uninsured adults are much less likely than those who are privately insured to visit a physician when needed, mainly attributed to their concerns about the cost of the treatment. The lack of insurance limits routine checkups, clinically indicated preventative medicines, and screening [6]. Uninsured individuals are more likely to be diagnosed with late-stage cancer at diverse sites [7, 8]. Probably the strongest reasons for poorer outcomes as well as comorbidities are poor compliance and inadequate care.

The limited access to health care is complex. Although health care workers are stereotyped as an inaccessible answer to the problem of the homeless, or tarnished with prejudice, the system is a barrier, as homeless people struggle to obtain access to health services. The patients themselves are an intrinsic part of the problem, bringing with them preconceived notions that they will not be treated, or not be treated well, and therefore not pursuing care and allowing their health problems to worsen and remain ignored. Compounding the lack of insurance, procrastination, and denial of their health problems, more pressing needs, such as obtaining food and shelter or avoiding harm, are greater priorities. Many of these individuals have histories of bad experiences with health care providers, making them reluctant to seek help again.

I did not want to have him accept a therapy that would give him horrible toxicity and then personally live with the guilt of having made the decision for him.

 

Among the homeless, the most common medical problems include upper respiratory tract infections, trauma, female genitourinary problems, peripheral vascular disease, musculoskeletal problems, and gastrointestinal disorders. Conditions such as hypertension and diabetes are often undetected and untreated. Skin, dental, and foot problems are also frequently seen. Alcohol use disorders are widespread, with an estimated lifetime prevalence rate of about 60% among homeless men [9]. In recent studies, the homeless population in Philadelphia had an age-adjusted mortality rate 3.5 times higher than the general population [10], while in New York, the rate was two to three times higher [11]. A study of Boston’s homeless population found that men aged 18 to 24 years were 5.9 times more likely to die, while men aged 25 to 44 years suffered a threefold greater mortality than their housed counterparts [12].

Cancer
Head and neck cancer contributes over 4% of all new cancer cases and 2% of cancer deaths annually. The U.S. figures are almost identical to those of the United Kingdom, but the incidence and mortality of head and neck cancer vary widely across the world. It is one of the leading causes of cancer mortality worldwide [13].

Despite improvements in diagnosis and local management, there has been no significant improvement in long-term survival rates in the last 30 years. Early-stage disease, especially in the larynx and oral cavity, has a relatively high cure rate. However, over 60% of patients with head and neck cancer present with advanced disease. Oropharyngeal cancer, the largest subgroup of head and neck cancer, has 5-year survival rates of only 55% for Caucasian Americans and 34% for African-Americans [14]. In locally advanced cases, cure rate is inversely related to tumor size and stage, predominantly the extent of regional node involvement. The biggest threat to long-term survival is the development of secondary primary tumors. The incidence of head and neck cancer increases with age, with patients typically over the age of 50. In younger patients, it is likely that genetic susceptibility and immunologic profile are relevant. It occurs twice as commonly in males than in females.

Ninety percent of head and neck cancers occur after exposure to known upper aerodigestive tract (UADT) carcinogens. This association is similar to the proven link between smoking and lung carcinoma. The main carcinogens related to head and neck squamous cell carcinoma are tobacco and tobacco-like substances. There is a linear dose-effect relationship between tobacco exposure and the magnitude of the carcinogenic effect. The duration of tobacco exposure is more important than the intensity, with the major carcinogenic action in the tar fraction, which contains both cancer initiators and promoters. In addition to causing head and neck cancer, smoking also adversely affects response and toxicity from radiotherapy [15], a primary line of treatment. Alcohol is an important promoter of carcinogenesis and is a contributive factor in at least 75% of UADT cancers, potentiating the carcinogenic effect of tobacco use [16].

Other risk factors include viral infections, which have been implicated in the pathogenesis of oral, laryngeal, and nasopharyngeal cancers [17–19]. It is thought that herpes simplex virus 1 may act as a mutagen or cofactor, working with other chemical agents. More recently, an association with human papilloma virus has been suggested [17, 20, 21]. Other important factors are genetics and previous radiation exposure. It is also thought that occupation may have a minor role in the development of head and neck cancers. This connection to greater rates of cancers in populations working in particular occupations has long been established. In 1775, Percival Potts, a British surgeon, identified the first known environmental carcinogen. With his identification of a high number of scrotal cancers in the chimney sweep population of London, he correctly linked this with the black soot from the chimneys as the causative agent. Clusters of head and neck cancers in nickel refining, woodworking, and leather workers suggest an association. Asbestos may also be associated in certain cases. With regard to diet, there is a suggestion that vitamin A and beta-carotene play protective roles in epithelial neoplasia [22]. Other important factors are genetics and previous radiation exposure.

How to Make Yourself Personally More Accessible to the Homeless
Despite the large number of homeless people living in the U.S., treating these individuals is still viewed as an understandably daunting task by many medical professionals. Blaming the system does not absolve us. How can we help? Only when we are honest about our attitudes does awareness of preconceived ideas and prejudice open to insight. In the case presented here, by remaining open-minded and professional toward their patient, the staff made themselves accessible. In this case, this open-mindedness allowed the patient to show himself as a friendly and caring individual with whom they could develop a relationship.

The rewarding responsibility of care is to transcend the mundane with a connection that is at the heart of being a healer.

 

How we communicate determines whether a homeless person feels that they can confide in and trust us. It is of absolute necessity for medical workers to find a way to communicate on a similar wavelength to their patients. This always involves investing more time and using simpler explanations, and often involves multiple visits for clarifying and summarizing information. By investing time and resources in an individual, the caregiver builds a trust and gains the respect of the patient. In return, this trust is reciprocated. By allowing the positive personal attributes of both parties to be expressed, the relationship in turn is established and evolves. Due to the high percentage of homeless people with problems similar to this particular individual, that is, limited education, illiteracy, mental illness, and lack of communication ability, with almost insurmountable problems, many years of investment may be necessary to assure commitment. As the relationship grows, it is vital to appreciate how far the partnership has progressed, and to celebrate this, instead of focusing on what still has to be accomplished [23]. Going beyond the ordinary standard of care to reach significantly disadvantaged patients is a necessary affirmative action. Although tarnished with fallout from politically correct lobbyists, it is more than expedient and epitomizes compassionate care. The relationship of the priest to this patient exemplifies the involvement required.

With regard to treatment, health care workers may have to develop different approaches and carefully weigh the risks and benefits. What treatment is best for one person may not always be optimal for a homeless individual. Some treatments are simply not compatible with homeless living, as in the case of this patient who could not have lived on the streets with his tracheostomy and G-tube, even without the complications of chemotherapy, and this has to be taken into consideration. Other arrangements, extra effort, and compromise are essential in working harder on behalf of the patient, with careful discharge planning and setting up support systems. Treatment may require considerable flexibility to be compatible with the patient’s lifestyle, and negotiating compromises is almost always inevitable. This is particularly emotive when cure is at stake.

Unconditional Love
Perhaps one of the most striking aspects of this case is the close relationship between the patient and his priest, a relationship marked by unconditional love. The Greek word Agape refers to the sacrificial love that goes beyond charitable friendship or affection, and is known by what it does more than how it feels. The priest had been part of a support network for the patient when all other areas of society had abandoned him. True to form, he kept up that support even when the patient presented him with overwhelming problems. The idea of unconditional love is one that, as human beings, we often struggle to accept. Yet most, if not all of us, aspire to offer it and to be given it in return. To give can be better than receiving [24]. A fundamental need of human beings is to form satisfying relationships. These relationships become a reality when we are loved, when we find meaning, and where we belong [25, 26].

However, as clinicians know, the rewarding responsibility of care is to transcend the mundane with a connection that is at the heart of being a healer. Although the bond may be harder between stereotypical polar individuals, and the power differential always a concern, profoundly meaningful relationships are somehow enhanced by diversity. Every clinical encounter contains this opportunity.

One Is Never Enough: Support Networks
Support comes in many forms. Support can be professional or personal, emotional or intellectual. It can be a deep well of privilege or anticipated. The availability of someone to provide help or emotional support may protect individuals from some of the negative consequences of major illnesses [27]. Social support has many dimensions, including functional and material support, strong interpersonal relationships, educational support, and all the facets of hope [28]. Although social capital may be measured in terms of whom you know and how many you know, theorists have articulated that a diversity of supportive contacts in your social network is vital to bring in new and positive connections, such as Father Andrew and this man’s medical team. The whole is then truly stronger than the sum of the parts [29–31].

	EPILOGUE

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J’s tumor recurred 3 months after completing chemoradiation treatment with grade III toxicities. He rapidly declined and died in a local hospice with Father Andrew at his side. Before his death, he asked to be baptized in his bed. He was buried from Saint Vasilios Greek Orthodox Church. The impact of his life with cancer lives on.

	REFERENCES

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