Recommendations for hospice care to terminally ill cancer patients: a phenomenological study of oncologists' experiences.

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Recommendations for Hospice Care to Terminally Ill Cancer Patients: A Phenomenological Study of Oncologists' Experiences Suzanne Marmo

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Fordham University Graduate School of Social Service , New York , New York , USA Published online: 16 May 2014.

To cite this article: Suzanne Marmo (2014) Recommendations for Hospice Care to Terminally Ill Cancer Patients: A Phenomenological Study of Oncologists' Experiences, Journal of Social Work in EndOf-Life & Palliative Care, 10:2, 149-169, DOI: 10.1080/15524256.2014.906373 To link to this article: http://dx.doi.org/10.1080/15524256.2014.906373

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Journal of Social Work in End-of-Life & Palliative Care, 10:149–169, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online DOI: 10.1080/15524256.2014.906373

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Recommendations for Hospice Care to Terminally Ill Cancer Patients: A Phenomenological Study of Oncologists’ Experiences SUZANNE MARMO Fordham University Graduate School of Social Service, New York, New York, USA

The aim of this exploratory study was to better understand oncologists’ experiences and their perceptions of hospice care as an end-of-life treatment choice for terminally ill cancer patients. To describe this experience, semi-structured qualitative interviews were conducted using phenomenological methods with nine oncologists. Four themes emerged from the data analysis: (a) feelings of discomfort and relief, (b) being different from others, (c) experience with nonhospice patients, and (d) factors influencing the decision to recommend hospice. Future research and a flexible interdisciplinary practice model are suggested to better assist with end-of-life care decision making and recommendations for hospice care with oncologists and their terminally ill cancer patients are presented. KEYWORDS hospice, oncology social work, phenomenology, physician decision making, qualitative, terminal illness

INTRODUCTION Death is an inevitable outcome for all American citizens; however, there is great variability in how and where death occurs. According to the National Hospice and Palliative Care Organization (NHPCO, 2012), approximately 41.6% of all deaths in the United States in 2009 occurred while patients were enrolled in hospice programs. For the advanced cancer patient who is facing terminal illness and death, the patient-centered approach of hospice has Received 15 July 2013; accepted 24 January 2014. Address correspondence to Suzanne Marmo, LCSW, Fordham University Graduate School of Social Service, 113 West 60th Street, New York, NY 10023, USA. E-mail: smarmoroman@ fordham.edu 149


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been linked to positive outcomes for decreasing patient anxiety, controlling patient pain, management of symptoms, and improving families’ bereavement process (Daugherty & Steensma, 2002; Temel et al., 2008). Research indicates that most patients with cancer would prefer to spend their final days at home on a hospice program; however, nearly one third of Medicare patients with cancer die in hospitals with an intense, and at times invasive, level of care in their last weeks of life (Morden et al., 2012; Piana, 2011). Cancer patients who are admitted to hospice programs have shorter lengths of stay and an increased need for more costly and intensive care-giving services compared with patients diagnosed with other illnesses (Earle et al., 2003; Finlay & Casarett, 2009; Iglehart, 2009; Wachterman, Marcantonio, Davis, & McCarthy, 2011). The purpose of this qualitative study was to better understand the variation and process of hospice recommendations for terminal cancer patients from the perspective of treating oncologists. While there have been some end-of-life decision-making research using qualitative methods to study terminally ill cancer patients’ treatment choices and the experiences of chronically ill older adults (Morrissey, 2011; Schapmire, Head, & Faul, 2012), little has been conducted from the perspective of the oncologist who provides the recommendation and certification of terminal illness for most cancer patients’ entry into hospice programs. This gap in the literature serves as further justification for an exploratory study to describe recommendations for hospice care as the treating oncologist experiences it. Understanding oncologists’ decision-making process with patients may help us to understand the barriers to hospice utilization for advanced cancer patients and suggest areas of future research that can improve the hospice referral process.

THE ROLE OF THE ONCOLOGIST Advanced cancer patients represent a large percentage of all hospice patients, and it is most often the oncologist who is responsible for assisting a patient and family with the decision to stop aggressive treatment and elect hospice services (NHPCO, 2012). This decision to pursue hospice care occurs primarily between individual patients and their treating physician; however, the timing and delivery of this recommendation may be affected by a variety of systemic factors that have just begun to be researched in the terminal prognosis disclosure and hospice literature. Oncologists play a key role in whether terminally ill patients will elect hospice services or continue to receive more aggressive hospital treatments (Parker et al., 2012). Levetown, Hayslip, and Peel (2000) described physicians as possessing the ‘‘primary control of information that drives medical decision-making’’ in end-of-life care (p. 324). Previous studies on oncologists’ practice behaviors have used observational qualitative methods and


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have found that patients tend to have physician-led encounters when faced with terminal care and treatment decisions (Audrey, Abel, Blazeby, Falk, & Campbell, 2008; Street, Gordon, & Haidet, 2007). Disclosing terminal illness and recommending hospice care for advanced cancer patients have been described as some of the most difficult tasks of oncologists’ practice (Baile et al., 1999; Parker et al., 2012). The research literature shows that physicians experience conflict and avoid discussions in which they have to present a lack of available curative treatment options to those who are diagnosed with metastatic disease (Baile et al., 1999; Gordon & Daugherty, 2003). This avoidance can lead to delay in referrals to hospice and recommendations for aggressive treatment when palliative care may be a more appropriate option. A research study administered at the Annual Meeting of the American Society of Clinical Oncology found that oncologists rated discussing lack of further curative treatment as the most difficult task in their practice, and therefore sometimes they avoided these discussions (Baile et al., 1999). Disclosure of terminal prognosis has been equated with feelings of personal responsibility for taking a patient’s hope away. In a 2003 study, Gordon and Daugherty conducted qualitative interviews with oncologists that revealed patterns of metaphors when speaking about terminal prognosis disclosure. Physicians reported feeling as if they themselves were inflicting physical violence on their patients when they had to inform them of a terminal prognosis. Phrases such not wanting to ‘‘hit them over the head with it’’ were often used to describe ways oncologists attempted to avoid communication patterns that might lead to insensitive disclosure of terminal illness (Gordon & Daugherty, 2003). Many oncologists are recommending palliative chemotherapy and radiation to patients in advanced stages of metastatic disease (Adorno, 2011; Barr, 2013). Because of the current financial constraints of reimbursement for hospice programs, costly treatments, even if determined to be palliative, may make a patient ineligible for admission to a hospice program. This common barrier to service provision among hospices thereby limits access for a significant portion of the population who may choose or be recommended for high-cost options for palliative care. A recent randomized survey of 591 hospice agencies revealed that 78% of them had enrollment policies that served to restrict admission to hospice care for patients with potentially high-cost medical care needs—such as chemotherapy, radiation, or artificial nutrition and hydration (Carlson, Barry, Cherlin, McCorkle, & Bradley, 2012). Additionally, recent studies have found higher percentages of noncancer patients admitted to for-profit hospices, which now make up the majority of hospices available to the general public (Wachterman et al., 2011). It has been suggested that cancer patients are less economically profitable to a hospice program due to shorter lengths of stay, higher costs of medication, and the intensity of care needed for this population (Aragon et al., 2012; Perry & Stone, 2011; Wachterman et al., 2011).


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Studies have shown that the timing and decision of recommendations to treat or to stop treatment may not always rely on just the individual knowledge base of a practicing physician, but may also be influenced by other factors outside the relationship between physician and patient (Lamont & Christakis, 2002; Morden et al., 2012). Recognizing an inherent power differential between physician and patient, this study’s purpose was to focus on the professional physicians’ practice behaviors that are guiding, and at times leading, end-of-life decision making for terminally ill cancer patients. A gap exists in the research literature that examines how oncologists perceive their experiences with terminally ill cancer patients and how they determine end-of-life care recommendations such as hospice with their patients. More specifically, what factors most influence their decisions to recommend patients to hospice programs?

METHOD Due to the complex nature of the research questions and the need for a descriptive and exploratory analysis of experience and perception, a qualitative inquiry using in-depth, semi-structured interviews was deemed the most appropriate approach (Creswell, 1998; Padgett, 2008). The researcher aimed to capture the meaning of oncologists’ shared experiences of recommending hospice to a terminally ill cancer patient and therefore chose a phenomenological perspective to guide this exploratory and descriptive study. A phenomenological perspective was assumed in an effort to capture the meaning of their lived experiences while bracketing the researcher’s preconceptions (Moustakas, 1994). Phenomenology as a philosophy draws on the writings of Husserl, who denies the ability to know any true objective reality outside of subjective consciousness. Instead, reality exists as it is perceived and given shared meaning by those who have experienced it. For the purpose of this study, Moustakas’ approach to phenomenological data analysis was used. This method focuses more on the description of the individual experiences of the different research participants, rather than the interpretations of the researcher. In terms of data collection, this approach guided creation of the semi-structured interview and attempted to allow participants to express their own subjective understanding of the experience of making a recommendation for hospice care to a terminally ill cancer patient. This method of data analysis permitted both the commonalities and diversity of meanings to emerge during the data analysis process.

Procedures As recommended by Creswell (1998), the researcher utilized purposive sampling to ensure that all participants had experienced the phenomenon

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of recommending hospice to a terminally ill cancer patient. The author had contact with the sample of participants through her own professional network. These key informants, both directly and indirectly known to the researcher, were contacted for the study. Inclusion criteria included currently practicing with a specialty in oncology, having admitting privileges at a local hospital, and having made prior recommendations of hospice care to at least five patients. Potential participants were invited by email to participate in a semi-structured interview at their office or a local hospital. Approximately 10 participants declined to participate citing time constraints or lack of interest. The final sample included nine board-certified oncologists from both the community and university setting. Two participants were female and seven participants were male. Years of practice experience as an oncologist ranged from 5 to 33 years and the average number of hospice referrals ranged from 1 to 10 per month (Table 1).

Strategies for Rigor Although generalizability is not a goal of qualitative research, transferability of findings could be considered in light of limitations. Shenton (2004) suggests four criteria that need to be satisfied and addressed in the research process: credibility, transferability, dependability, and confirmability. To meet the criteria for credibility, specific phenomenological research methods as outlined in the data collection and analysis portions of the study were followed and documented in an audit trail. The primary researcher acknowledges the limitations of the study and also advised all participants of her previous experience being a medical social worker for 18 years with a primary focus of practice being adult oncology social work. In an attempt to minimize bias due to the researcher’s professional proximity to the topic, the researcher engaged in peer debriefing and consultation with several researchers experienced in qualitative phenomenological data collection and analysis. TABLE 1 Study Participants’ Demographics Participant number 1 2 3 4 5 6 7 8 9

Gender

Average # of referrals per month

Age

Years practicing oncology

Male Female Female Male Male Male Male Male Male

4 8–10 3–4 5 4 1 1 6–10 2–3

58 51 54 43 48 43 36 59 64

27 25 23 10 14 5 6.5 26 33

Primary setting of practice: Community=University University Community Community Community Community University Community University Community


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Through this consultation, the researcher brought transcripts and identified themes to other researchers to improve interrater reliability in the data analysis process with researchers who were not practicing oncology social workers. For transferability, participants with diverse age, gender, and practice settings were sought to increase the likelihood that results might be applicable across different practice settings. Practice settings included both community and university settings. The primary researcher attempted to recruit participants from a local dedicated cancer center, but was unable to secure participation from any oncologists employed there. Although the sample size may be viewed as small, participants were recruited to the point of data saturation and new themes did not appear to be emerging from the interview process. Finally, the researcher attempted to provide thick descriptions of the content, as often as possible in the participants’ own words, to allow the reader of this study to make their own judgments about how transferable the findings are from one case to the next. Careful adherence to phenomenological research methods were conducted and documented through an audit trail in data collection and analysis so that other researchers may choose to follow similar steps in conducting similar research to meet the third criteria of dependability. Confirmability was attempted through performing member checking that involved the researcher bringing the transcribed data, with significance statements and themes identified, back to an individual participant to determine if the essence and meaning of his experience was uncovered with accuracy. The author acknowledges that additional member checking may have increased confirmability, but because of time constraints of participants, it could not be completed during the study. The study received approval from Fordham University’s Institutional Review Board. Data were collected from June 2012 through January 2013. Following the informed consent process, the researcher conducted in-depth, open-ended interviews with each participant. In order to ensure that important topics were addressed, the researcher used a semi-structured interview approach with a purposed sequence of themes and suggested questions (see Appendix 1 for the interview guide). Consistent with phenomenological inquiry, the interview process remained open to participant-guided discussion to allow rich descriptions of their perceptions of the phenomenon. As the interview process continued, the theme of difference and disagreement with palliative care medical doctors emerged and was often added to the semi-structured interview by the research participants. As suggested by Creswell (1998), questions were worded to elicit responses about perceptions of the experience of hospice recommendations to patients in the past and the present, and their anticipation of future trends. Each interview lasted between 15 and 35 minutes, were recorded using an Olympus WOW SRS digital recorder (Olympus Imaging America Inc., Center Valley, PA, USA), and were transcribed verbatim by the primary researcher.


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Data Analysis To allow for maximum emersion in the research data, as well as inclusion of nonverbal communication such as pausing and indicators of agreement or disagreement, the primary researcher conducting the study transcribed all the data. Transcripts were then imported into a qualitative software program to facilitate analysis (NVivo 10, QSR International Inc., Burlington, MA, USA). As suggested by Moustakas (1994), the first step in phenomenological research data analysis was for the primary researcher to describe and reflect on experiences with the phenomenon of physician=patient interactions, terminal illness, hospice, and death. The purpose of this step was to allow the researcher to apply the concept of epoche, in order to bracket personal experience and allow for increased focus on the participants. The second step, horizonalization, was conducted after all interviews were complete to review the interview transcripts for phrases of ‘‘significant statements’’ that provided understanding of how participants have communicated their experience with the phenomenon of recommending hospice to a terminally ill cancer patient. These significant statements were then developed into 12 clusters of meaning that uncovered themes emerging from the data; these clusters were later combined to reveal four themes in the data. The third step included writing out and providing examples of the textural descriptions (what the participants experienced), followed by the structural descriptions (how the participants experienced this phenomenon). The final step included combining both the textural and structural descriptions to develop a composite description to present the meaning or essence of the phenomenon as the common subjective shared experiences of the participants.

RESULTS Common themes were identified in data analysis and are outlined here to give a composite description of the meaning and essence of the experiences of oncologists’ recommendations for hospice to terminally ill cancer patients (see Appendix 2 for the themes). The four primary themes included feelings; difference from other practitioners; experience with nonhospice patients; and factors influencing the decision to refer to hospice. The complexity of the dynamics of interacting with diverse dying cancer patients yielded several additional domains under these four primary themes identified in the data analysis process. Different domains of the theme of feelings included internal feelings of relief and feelings of discomfort; the theme of being different from other providers included the domains of being different from other oncologists, being different from palliative medicine, and becoming different due to experience. A theme addressed by all participants was their experience with nonhospice

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patients, and the final theme of factors influencing hospice recommendation yielded the five domains of performance status, options for treatment, age of patient, financial aspects, and family. The data revealed a sense of an understanding and specialized care given to those patients who choose as well as do not choose hospice care. The themes seemed to represent a need for a flexible adaptive approach to practice.

Feelings: ‘‘Sometimes It’s Tough, Sometimes It’s a Relief’’


FEELINGS OF DISCOMFORT The experience of recommending hospice was guided primarily by the second question in the semi-structured interview: ‘‘Can you tell me what the experience of making a hospice recommendation is like for you?’’ Participants acknowledged the diverse experiences they had with patients and the challenging internal decision-making processes they went through when making a hospice recommendation to a cancer patient. This process was described not only as a ‘‘tough’’ or a ‘‘difficult’’ decision, but was also described as ‘‘terrible’’ and ‘‘the worst decision I have to make.’’ Stopping active treatment was often expressed as being connected to failure, either as a failure of medicine or a failure in the relationship with the patient: Well, it’s horrible, I wouldn’t say a failure . . . well personally on my part, but it’s like a failure of medicine I guess. That we’ve reached a point where we can’t help the person anymore. (Participant #5)

Despite the availability of hospice and an inclusion of the treating oncologist in the hospice care team, the process of being able to give a patient active treatment still seemed to be an important contribution to the perceived relationship or attachment the oncologist has made with the patient. A personal feeling that they were ‘‘giving up’’ on a patient by referring them to hospice was expressed by several of the participants: If I’ve known them for a long time, which with cancer treatment means several years, it gets harder and harder with each passing month to make that objective decision, cause we’ve grown a little close, and so it becomes harder and harder, I always want to do something. (Participant #8) It’s tough, because you are telling a patient that you are giving up on the patient, and not being able to give them active treatment to fight their cancer. (Participant #9) Sometimes I’m a little hesitant to refer to hospice just because you know, I don’t want to give up entirely and then it will take the nurse that I work with to just kind of say, ‘‘We really should put hospice, hospice services in place.’’ (Participant # 6)


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FEELINGS OF RELIEF Several of the participants did express making a hospice recommendation as a relief with some patients, specifically those patients who were able to verbalize their own wishes to discontinue active treatment:


Some will say, ‘‘No, doc, I’ve had my share of life, it’s time to go.’’ Then that makes it easier for me to offer hospice or palliative care. (Participant #8) The other half of the time the patients expect, you know, they’re okay with it, they’re ready for it, you know, they’ve suffered enough. (Participant #7)

Oncologists in this study expressed understanding and insight of their patients’ circumstances and struggles. An interesting finding was that nearly all of the participants saw themselves as different from other practitioners and described the effect this has on their patients’ care.

Difference from Other Practitioners ‘‘Because Everybody Has a Different Approach’’ Participants in this study expressed a recurrent theme of seeing themselves as being different from other practitioners. The theme of being different yielded three domains: being different from other oncologists, being different from palliative care doctors, and becoming different based upon experience. These themes also seemed to give meaning to how oncologists perceived their practice in relation to other medical professionals. DIFFERENT FROM OTHER ONCOLOGISTS As expressed by one participant, patients should be given the option of choosing the type of oncologist they wish to be treated by. A willingness to stop treatment was often used to distinguish oncologists and their practice as aggressive or open to stopping treatment: There’s a reason that there are lots of oncologists in an area because everybody has a different approach and people are entitled to pick their doctors. (Participant #2) A lot of times people will go for second or third opinions towards the end of life, you know at different institutions . . . it’s like if one set of doctors says you should be on this type of treatment, and then they want to be very aggressive. (Participant #3)

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I think that’s my style, and fortunately, my partner’s style of practicing is that we tend not to push, and that you actively have the patient involved . . . all along. (Participant #1) This may be unique to me and oncologists that think along the same lines I do, I tend to stop sooner than other oncologists as far as deciding how far we have to go. (Participant #1) I tend to be a very open to stopping treatment. (Participant #8)


BEING DIFFERENT FROM PALLIATIVE CARE DOCTORS Most participants identified themselves as being different from other oncologists. Additionally, several participants also expressed a dissatisfaction and frustration related to the emergence of the specialty of palliative care and a difference in their understanding of the cancer disease process and illness trajectory: They write off the patient a little sooner than we would. Whereas, we know the patient, we know the pathology, know the scans. Sometimes we feel that it may not be the right time for palliative care. (Participant #7) I always think most oncologists are optimistic, in general, because you really, can’t come to work every day if you are pessimistic about what you are doing . . . so I think there’s sometimes a bit of difference of opinion with palliative care doctors, who I think are more inclined to see a diagnosis, see a patient in a hospital bed and immediately, I hate to use the word, write off the patient. (Participant #5) [Palliative care] is controlled by people who are not oncology specialized, and don’t have the same understanding of what’s happening to the patient, and nor do they appropriately communicate with us, about what our expectations are for their care, and their help in managing the patient. And this is . . . this is probably worsening. (Participant #4)

BEING DIFFERENT BECAUSE OF EXPERIENCE Despite advances in cancer treatment and openness to offering active treatment to patients who do not want to stop treatment, several oncologists identified a change in their practice behaviors and an increased willingness to stop treatment based upon prior experiences they have had: The patient doesn’t really know what they are going to experience, you know, what they are going to go through from prior experience, and now you have to say, you have to in your mind say, that, you know, is it really worth it? (Participant #7)


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You know in the back of your mind, and in your heart, another cycle is just not going to do this. (Participant #1) I think when you are younger you do push, push, push, and you have more instances where a person dies as a result of your chemotherapy, whereas now, I would say I have less instances that I feel the person died from the chemo, and they died of more of what would be considered a natural death. (Participant #3)


I guess I’ve been around long enough to understand there are different ways of doing things that may all come out in the end to be the same. (Participant #8) I think earlier on, like I said, I was more aggressive with treating, treating, treating. Now I think I can recognize a little bit earlier on and make those kind of recommendations to people. (Participant #3)

Nonhospice Patients: ‘‘The Word Hospice Is Not in Their Vocabulary’’ A theme addressed by all participants was a sense of respect and understanding for those patients who do not choose hospice. Consistent with a philosophy of patient-centered care, participants revealed an acknowledgment and understanding of a need to respect those individuals who do not choose hospice care. This theme, guided by the first oncologist who participated in the study, described how for some patients, ‘‘The word hospice is not in their vocabulary,’’ revealing an understanding of the population of patients who will never elect hospice services. This patient population, at times, disagreed with oncologists’ recommendation for stopping treatment and the futility of further aggressive measures. However, all participants expressed a respect for the individual patient’s choice to continue active treatment: There are patients that clearly, the word hospice is not in their vocabulary, the concept of giving up just doesn’t exist, and we have patients that til the bitter end will want to keep fighting. (Participant #1) You know they love to say to us, ‘‘Oh, do hospice in advance and do it 6 months before,’’ and all that stuff, but sometimes, patients don’t want that. (Participant #9) Sometimes you will just know, you don’t want to give them another treatment, because it’s certainly not going to help them. But . . . the patient, in the end, is in charge. (Participant #4) They don’t understand the futility of care and it takes some time for them to come around to that, and some of them never do. (Participant #2)

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If the patient says I understand that it might not work, but I want to be treated anyway, in general, I would say yes. Personally, I haven’t hurt too many patients by kinda trying a last ditch effort. (Participant #6)

Factors Influencing Decision to Refer to Hospice


The theme of factors influencing hospice was guided by most of the direct questions in the semi-structured interview. Answers from oncologists seemed to reflect a need to be able to negotiate and understand the interaction between complex systems of the science of cancer (performance status and treatment options) along with age, family=social support system, and financial factors. PERFORMANCE STATUS The science of cancer and the decision to offer treatment was guided by performance status. Participants described knowing whether to offer active treatment based upon how functional their patient was: We evaluate patients based on what’s called the ECOG performance status, which really just determines how functional they are. Can they perform activities of daily living, are they sleeping, you know, more than half the day? (Participant #4) Performance status is one of the most, you know, always associated with prognosis, and trumps the scans, the blood tests and so on. (Participant #6) If someone walks into your cancer center, you know, generally speaking, you can treat them, if someone has to be wheeled in on a stretcher, or in a wheelchair, the chances of them tolerating treatment and the chances of them benefitting from treatment would be very, very low, or much less, and that would be more appropriate for hospice. (Participant #6)

OPTIONS FOR TREATMENT Advancements in the science of cancer include an expertise in understanding not only the disease process, but also the new treatments available. The increased availability of treatment options for both active treatment and palliation of symptoms was also identified by several oncologists as affecting early referral rates to hospice, and at times serving as a barrier to it: The time frame for which they are referred for hospice, is worse than it ever has been, but with so many options available, you tend not to think about the last one. (Participant #7) Patients are put on hospice way, way too late. You know, they have less than a month to live and they don’t derive the potential benefits


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for themselves, or for their families, and a lot of it has to do with the oncologist’s inability to continue any palliation on them. (Participant #4) There are more and more treatment options, which we can give patients one after another after another. I think we should be able to offer them that, because some of the times, you are going to hit a home run, or at least a double where you can prolong their life significantly. So I think that’s worth doing, and the more options we have, we’re turning these diseases into chronic diseases. (Participant #9)


FAMILY Family was identified as a vital contribution to the patient care experience and a necessary component of the physician-patient relationship. The theme of family included the domains of support system and relationship. The family support system was described by one oncologist as the ‘‘intangible’’ factor contributing to a recommendation for hospice care. Awareness of the support system for the individual patient contributed to the need and ability for patients to be able to accept hospice services: The other part, the intangible part, is the part about what kind of support system they have at home, whether, you know, are they going to be coming back and forth into the hospital. What you know about the patient and their family life, whether you feel they would be happier at home and in their own surroundings, and whether they have people available to help them. (Participant #3) Families are asking for hospice referrals because they are finding it difficult to care for a terminally ill patient at home. (Participant #1) People want home hospice, so we’ve made those arrangements, and then occasionally we will refer to in-patient hospice. Just depending upon family support and what is tolerable for them. (Participant #6)

The relationship with the family sometimes complicated treatment decisions for the patient and required negotiation and understanding to come to terms with end-of-life treatment recommendations. The necessity of time and family meetings were identified as important to deciding to stop treatment and hospice recommendations: We need to meet and unfortunately it makes for a long day . . . but I can tell you that, if we don’t have family meetings, it will make a lot of people unhappy. (Participant #1) You do your best with family members, unfortunately, patients have a lot of family, and there’s always going to be someone in the family who is . . . resentful, or upset, and you can understand it. (Participant #1)

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We do our best, but our job is for the patient. Obviously, you want to do your best that the family understands because they’re the ones who are left behind with the loss. (Participant #4) You have to put in that time and effort, and it’s time consuming. (Participant #2)

AGE OF PATIENT


Age was identified as a contributing factor to stopping treatment and recommending hospice, whereas the potential for side effects was described along with a desire to want to try more aggressive treatment on a younger person: Your recommendations could be different for a 37-year-old when compared to an 87-year-old. The reason being, that the chance of their responding to treatment is equal, but the chance of side effects is much greater in the elderly patient. (Participant #5) Especially for a young person, you don’t want to not try. (Participant #3) We’ve given wildly nonstandard treatment occasionally to young people, who you know, want everything done. (Participant #6)

FINANCIAL FACTORS The economics of end-of-life cancer care was acknowledged in the interview process and revealed an external factor that the oncologists believed affected hospice care recommendations. The barriers for payment to hospice for patients still wishing to pursue treatment were also addressed: I think it [hospice] is a very cost-effective way to take care of people as well. And I think that of course is always the insurance’s bottom line . . .. (Participant #2) I think there is going to be some financial problems with that. It’s easier to put patients in end-of-life care then to give them experimental investigational treatment. (Participant #9) The big issue we run into for hospice, at least locally or in New York, is that most hospice companies will not accept a patient who is on treatment. (Participant #4)

DISCUSSION The purpose of this study was to better understand the unique experiences of experienced oncologists and their process of making hospice recommendations. Consistent with previous literature, oncologists identified several factors in addition to individual scientific knowledge that influenced the decision to



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recommend hospice to a terminally ill cancer patient (Lamont & Christakis, 2002; Morden et al., 2012). Consistent with recent critiques of the current payment structure of the Medicare hospice benefit, several participants expressed frustration with the inability to access hospice services and palliative treatment concurrently. Due to the current financial constraints of reimbursement for hospice programs, costly treatments, even if determined to be palliative, can make a patient ineligible for admission to a hospice program. This difficulty in accessing services for patients who wish to continue palliative chemotherapy was identified by several of the participants. The research literature has identified this as a common barrier to service provision among hospices that limits access to a significant portion of the population who may choose or be recommended for high-cost options for palliative care (Carlson et al., 2012). An important barrier for hospice utilization is the individual physician’s attitudes about terminal prognosis disclosure (McGorty & Bornstein, 2003). Ache, Shannon, Heckman, Diehl, and Willis (2011) have suggested that doctors may be acting as possible impediments to hospice referral and utilization because of the physician’s discomfort discussing death, the primacy placed on curative care, and being ‘‘unaware of the dynamic interplay between his or her personal perspectives and those of the patient’’ (p. 543). The oncologists in this current study seemed to differ from findings such as those in previous research, as many participants expressed an increased comfort level discussing death and end-of-life care planning. Several more experienced oncologists described this as a skill that developed with practice experience, rather than specific pathways for treatment or knowledge based on direct scientific evidence. An additional finding in this study was an awareness of the primacy placed on curative care in current oncology practice, but also a respect for the individual choices of cancer patients who did not wish to pursue hospice care. Consistent with earlier studies of oncologists’ perceptions of their practice behaviors, end-of-life care conversations were described as a primarily physician-led encounter with very little input from other disciplines that may be involved in patient care (Audrey et al., 2008; Street et al., 2007). Specifically in the community setting, where the majority of participants in this study practiced, the participants expressed no discussion of the potential of involving social workers to assist with this process, nor of the value of utilizing an interdisciplinary team model to approach end-of-life care decision making with cancer patients and their families. The interdisciplinary team has been distinguished in the palliative care research literature as different from the multidisciplinary team in that the interactions of the different specialties are an integral part of plan-of-care team model (Byock, 1997). The value of an interdisciplinary team and the specific contributions of social work as a member of this team have been supported by the research literature and are recommended by the World Health Organization (2014) for effective end-of-life and palliative care (Bomba, Morrissey, & Leven, 2011; Forrest & Derrick, 2010).

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LIMITATIONS The author acknowledges that this qualitative study has significant limitations, but it may serve as a useful descriptive and exploratory study to promote further research into this area. Due to participants’ time constraints, the time span of the interviews (15–35 minutes) was not consistent with recommended phenomenological data collection methods. This may be considered a methodological weakness of the current study, but the findings may help justify further study of this phenomenon using additional interviews to explore these issues in greater depth and detail. Given the interview format and the inherent power differential between social worker and oncologist, respondent bias may have been an additional significant limitation to the study design. Interviewer bias may have affected the interpretation of the data, and the small sample size limited the study’s transferability. The researcher admits the limitations of this study for all populations who may experience this phenomenon. However, the goal of this qualitative research study was not generalizability, but rather to better understand the research problem to inform possible future research studies on factors that may be influencing oncologists’ decisions to recommend or not recommend hospice to terminally ill cancer patients.

CONCLUSION AND SUGGESTIONS FOR FUTURE RESEARCH As suggested by one participant in the study, oncologists appear to have different practice styles and ‘‘people are entitled to pick their doctors.’’ However, research might explore whether patients are aware of their options for care and are aware of their oncologist’s approach to cancer treatment. Additionally, it should be learned whether patients always choose their primary oncologist or their referring doctor makes this choice for them. Recent research has noted disparities in access to oncology and end-of-life treatment options based upon where a patient lives and how many medical oncologists are practicing in the area as well as socioeconomic status and racial differences (Morden et al., 2012; NHPCO, 2012; Ward et al., 2013). The present study focused on a suburban area with many different options for medical hematology=oncology specialists in close proximity and the choice for patients to choose active treatment may be more accessible there compared with other sections of the United States. As noted by Ward and colleagues (2013), receiving treatment in the late stages of metastatic disease is significantly less common for persons in rural areas compared with those in urban areas. Previous studies have noted the association with geographic location and the potential for hospice utilization (Morden et al., 2012). While the transferability of the findings of this research study to other geographic locations may be limited, future research should focus on uncovering barriers to



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the options for access both to active treatment and to hospice care services among populations who are commonly underserved. Considerations for future practice and policy should include attempts at minimizing power differentials and maximizing physician communication. A 2011 survey of practicing oncologists revealed that nearly one half of oncologists surveyed saw patients for 13–20 minutes each, and 13% of the physicians reported patient visits to be less than 12 minutes each (Medscape, 2011). It is questionable whether the necessary communication regarding life-and-death decisions can be adequately covered in such a limited time and if an interdisciplinary professional team approach may provide better patient outcomes and higher quality cancer care. Future research should determine if patients perceive that their physician communicates adequately and provides support to guide them in their end-of-life care planning. It may also be necessary to address the financial incentive for physician and prescription drug companies to continue costly curative treatment. This may require oversight to ensure that patients are not being misdirected in their recommendations for the financial benefit of the agents who are recommending treatment. In the 1940s, hospitals were required to employ medical social workers to receive accreditation (Fobair et al., 2009). Since that time, cancer treatment centers have developed and utilized oncology social work programs to better assist cancer patients to cope with the psychosocial factors of their illness (Fobair et al., 2009). The National Cancer Institute (NCI, 2010) estimates that only 15% of cancer patients are treated in major academic cancer centers. With the continued shift toward facilitating treatment in an outpatient setting, oncologists should consider increased utilization of qualified oncology social work services to assist with end-of-life treatment recommendations and care planning. The integration of social work may be a cost-effective option to provide assistance to terminally ill cancer patients as they negotiate the complex environment and systems of care encountered as their disease process advances. As suggested in this analysis, the unpredictability of the cancer trajectory and the dying process, along with the inherent power differential between physician and patient, contribute to a system of care that may require enhanced interdisciplinary intervention to better serve terminally ill cancer patients. Although this approach seems to be embraced in the university setting and in hospice care models, the use of an interdisciplinary team is lacking in the current community oncology practice model. Social workers have been described as ‘‘central health care professionals’’ to assist with difficult end-oflife care decision-making processes and conflict resolution (Bomba et al., 2011). Kovacs, Hayden Bellin, and Fauri (2006) describe social work as uniquely qualified to provide leadership in the provision of family-centered end-of-life care. Further research to investigate ways to enhance end-of-life patient care in a changing health care environment may include a call to the oncology social work profession to increase the presence of social workers in community settings and greater collaboration with an interdisciplinary

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team in the complex referral and planning process for hospice and palliative care recommendations.


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APPENDIX 1: Semi-Structured Interview 1. Can you tell me how you come about your decision to recommend hospice to a terminally ill cancer patient? 2. Can you tell me more about what the experience of making a hospice recommendation is like for you? 3. Do your personal feelings ever influence your end-of-life treatment recommendations? 4. Do other factors ever influence your end-of-life treatment recommendations? 5. You mentioned earlier that you felt ___ was a contributing factor influencing your decision to make a hospice recommendation, can you tell me more about what that experience is like for you when ___ influences your decision making with a terminally ill cancer patient? 6. Can you tell me more about what the experience of having a different opinion (what some may call incongruence) between your treatment recommendation and a terminally ill cancer patient? 7. How about incongruence in treatment recommendations with your opinion, the family, and the patient—what is that experience like for you? 8. How about incongruence in treatment recommendations with your opinion, other medical professionals, and the patient—what is that experience like for you? 9. Has your tendency to recommend your patients to hospice changed in the past 10 years? If yes, how is it different now? What do you project will be your tendency to recommend hospice to your patients in the next year, how about the next 5?



APPENDIX 2: Themes—The Lived Experience of Making a Hospice Recommendation 1. Feelings a. Feelings of discomfort b. Feelings of relief 2. Difference from other practitioners a. Different from other oncologists b. Different from palliative care doctors c. Oncologists previous experience 3. Nonhospice patients 4. Factors influencing decision to refer to hospice a. Performance status b. Options for treatment c. Family d. Age of the patient e. Financial factors

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Experience with a hospice-care program for the terminally ill.

Experiences of truth disclosure in terminally ill cancer patients in palliative home care.

Hospice or rehabilitation hospital? Alternatives for the terminally ill.

Taking the stigma out of hospice care: flexible approaches for the terminally ill.

Values important to terminally ill African American older adults in receiving hospice care.

Feasibility and economic impact of dedicated hospice inpatient units for terminally ill ICU patients.

Physicians' preferences for hospice if they were terminally ill and the timing of hospice discussions with their patients.

Palliative care for the terminally ill.

Experiences of intermediate care among older people: a phenomenological study.

Randomised controlled trial of effects of coordinating care for terminally ill cancer patients.

Preferences for Aggressive End-of-life Care and Their Determinants Among Taiwanese Terminally Ill Cancer Patients.

Interpersonal aspects in the care of terminally ill patients.

Financial help for terminally ill patients.

Reasons for transferral to emergency departments of terminally ill patients - a French descriptive and retrospective study.

Characteristics of Oral Problems and Effects of Oral Care in Terminally Ill Patients With Cancer.

The use of urinary catheters in terminally ill cancer patients.

Palliative sedation for terminally ill cancer patients in a tertiary cancer center in Shanghai, China.

Oral and dental disease in terminally ill cancer patients.

From Albania to Zambia: travel back to country of origin as a goal of care for terminally ill patients.

Oxidative stress level is not associated with survival in terminally ill cancer patients: a preliminary study.

Physicians' attitude toward recurrent hypercalcemia in terminally ill cancer patients.

Random Serum Cortisol as a Predictor for Survival of Terminally Ill Patients With Cancer: A Preliminary Study.

Comparison of terminally ill cancer- vs. non-cancer patients in specialized palliative home care in Germany - a single service analysis.

The question of disclosing the diagnosis to terminally ill patients.