Utilizing an Autoethnographic Case Study Approach to Explore Patient-Centered Care and Its Principles in an Oncology and Palliative Care Setting

Abstract

In this article, an autoethnographic case study approach is used to explore the first author’s experience with both oncology and palliative care services. Connections are made to the literature, with a specific focus on the eight patient-centered principles and the benefits of adherence to these principles in a health context. When health professionals do not address treatment from this perspective, consequences for the patient can be negative. The aim of this article is to use the first author’s lived experience to explore the pertinence of maintaining the patient’s centrality in care planning. It is also argued that patient-centered care is the rhetoric within contemporary funding models rather than the reality of practice. Henceforth, recommendations for health-care professionals are also provided. Each of the eight principles is discussed in accordance with the first author’s perspective, as she lives each day with advanced cancer which will ultimately claim her life.

Keywords

patient-centered care patient-centered principles oncology palliative care autoethnography

Introduction

The purpose of this article is to transport the reader on a journey with the first author, as she articulates her experience with advanced breast cancer and her interactions with oncology and palliative care services within the framework of the eight picker principles of patient-centered care (PCC). The article will begin by providing clear definitions relating to oncology and palliative care and thus exploring literature that highlight the background term “patient-centered care” and the development of the principles. How PCC is connected to current funding models, some of the complexities and benefits relating to PCC and a rational regarding why an autoethnographic approach was utilized will subsequently be discussed.

Literature Review

The Medical Oncology Group of Australia (2009) defines oncology as being a subspeciality of internal medicine devoted to the investigation, diagnosis, and management of persons living with cancer. It incorporates preventative treatment and curative methods. The main treatment options oncology services offer is chemotherapy, radiation therapy, and surgery and hormone therapy (Cancer Council Australia, 2018). Consequently, palliative care is defined by the World Health Organization (2002) as being:

an approach which improves the quality of life of patients facing problems associated with life-threatening illness through the prevention and relief and suffering by means of early identification and impeccable treatment of pain and other problems, physical, psychosocial and spiritual. (p. 1)

It aims to adopt a holistic approach that also considers family or carer’s concerns as well as patients, as they journey toward end of life. When disease has extensively progressed, the treatment will require a change from curative measures to a palliative approach. There will be a shift in the goal of care, with the focus now being on symptom management and psychosocial issues rather than disease annihilation (Kaur & Mohanti, 2011).

PCC is a term that is increasingly used in the literature, in relation to health reforms and facilitating effective outcomes for people living with chronic illness (Epstein, Fiscella, Lesser, & Strange, 2010). PCC seeks to pinpoint medical attention on the individual patient’s primary concerns and needs rather than the doctor’s agenda, staking a clearly contrasting position with most aspects of traditional clinical health-care delivery settings (Bardes, 2012). The term “patient-centered care” was coined from a landmark study by the Picker Institute and was designed to highlight the importance of critically understanding the experience of illness and addressing patient concerns within increasingly fragmented and complex health-care systems (Barry & Edgman-Levitan, 2012). The multiyear study was conducted by the Picker Institute in partnership with patients and families, with results demonstrating the need for health professionals and health-care systems to realign with humanity, values, and choices of the people in their care, rather than their diagnoses (Barry & Edgman-Levitan, 2012). PCC is operationalized through reorienting the moral behavior of health professionals based on the premise that respecting the patient’s preferences is the right thing to do (Epstein & Street, 2011; Bardes, 2012). The Picker Institute research undertook extensive research and ultimately identified eight characteristics of care, from the perspective of patients. These are referred to as the Picker Principles (Barry & Edgman-Levitan, 2012).

PCC is also synonymous with national health-care reforms that have been underway in Australia since 2008; a new funding arrangement referred to as activity-based funding (ABF). ABF is a recently new funding arrangement where health services are funding in accordance with the activities they perform (O’Reilly et al., 2012). The overall aim of ABF is fiscal efficiency for the health service provider and a more effective use of resources, and in theory, ABF provides a financial incentive to increase the quality of care (O’Reilly et al., 2012). The Australian Commission on Safety and Quality in Healthcare (2011) state that health reform arrangements (such as the Performance and Accountability Framework of 2010 National Health and Hospitals Network Agreement) provide incentives to health professionals to perform quality PCC by linking it with ABF. The Independent Hospital Pricing Authority (2011) suggests that ABF is inherently a person-centered funding arrangement because it is connected to the philosophy espoused in treatment rather than hospital size and characteristics of a population.

However, despite ABF incentives to practice PCC, health professionals struggle with the culture change, which leads to varied outcomes in ability to consistently practice in this way. In their study of health professionals implementing PCC in a chronic disease setting, Carlström and Ekman (2012) found that key driver for successful culture change was determined by the quality of human relations. Among the 170 nurses surveyed, resistance to change was characterized by nurses’ heavy focus on routine, cognitive rigidity, short-term focus, and emotional reaction to imposed changes in organizational culture. Their ability to respond positively to change and incorporate the philosophy of PCC into their practice was largely determined by the three core characteristics of human relations: flexibility, cohesion, trust, and belongingness.

Advances in medical science have created an environment in which treatment options based on the best available evidence are designed to improve health outcomes; however, frequently, this results in patients being alienated from important discussions about their health (Barry & Edgman-Levitan, 2012). Confused by conversations that revolve around science and medical terminology, patients are left uncertain about their self-management and how to navigate the overwhelming amount of treatment options available to them (Barry & Edgman-Levitan, 2012). When patients are disengaged, hospital resources are essentially utilized on repetitive patient psychoeducation efforts and ensuing increased need for referrals. When engaged patients express dissatisfaction, this is a warning sign for medical practitioners that a review of operations and patient flow processes need to be addressed (Hall, 2008). Furthermore, PCC has been associated with reductions in diagnostic testing and unnecessary referrals; a reduction in litigation orchestrated by patients against health professionals; increases in value for patients through humanistic relationships; and enhanced patient safety through ensuring better communication of choices, needs, and expectations (Bauman, Fardy, & Harris, 2003; Epstein et al., 2010; Hall, 2008). In a general practitioner context, research purports PCC was directly connected to reduced patient distress and emotional status and positively increased quality of life (Dambha, Griffin, & Kinmonth, 2015; Ulin, Malm, & Nygardh, 2015).

Despite the positive impacts that PCC has on health professionals’ performance and funding of health services, the balance between economic reward and quality care requires further attention. Many practitioners are unclear on how to administer PCC in their day-to-day interactions resulting in patient confusion regarding chronic health conditions and medications and an overall lack of confidence in the treating team (Fallowfield & Jenkins, 1999; Kitson, Marshall, Bassett, & Zeitz, 2012; Leonardsen et al., 2017). Australian Commission on Safety and Quality in Healthcare (2011) states that health professionals struggle to carry out PCC in their practice and believe that more focused education in this area would be useful. Health professionals generally find it challenging to actively involve and encourage patient participation in the care planning process.

It is therefore argued within this article that the focus on the efficiency and outcomes has become the prominent focus of ABF, and the tenet of PCC is overlooked in many health settings. This will be explored by means of an autoethnographic case study approach where the first author’s experiences will emphasis this gap despite the contemporary rhetoric.

Autoethnography

This article draws on an autoethnographic case study approach to explore the first author’s experience with both oncology and palliative care services and the concept of PCC. Case study narratives are a subjective autoethnographic investigation of a phenomenon, remaining in solid alliance with qualitative research (Mills, Durepos, & Weibe, 2010). Mendez (2013) states that autoethnography is a valid research method utilized to analyze people’s lives drawing on the researcher’s own experience. It is a qualitative method that gives a voice to people’s personal journey for understanding a social issue (Wall, 2008). Sparkes (2000) echoes this sentiment by stating autoethnographies are “highly personalised accounts that draw upon the experience of the author/researcher for extending sociological understanding” (p. 21). In an autoethnographic approach, the researcher uses self-reflection in writing to explore his or her personal experience. However, it is important to note that this type of methodology cannot be entirely objective. Rather, the researcher’s subjectivity is celebrated instead of being considered as a limitation (Ellis, Adams, & Bochner, 2011).

Bochner and Ellis (1996) stated “on the whole, autoethnographers don’t want you to sit back and be spectators, they want the reader to feel, care and desire” (as cited in Mendez, 2013, p. 281). Autoethnography is used to pursue a social justice agenda, with the hope of gaining freedom from oppression for vulnerable populations within broader sociopolitical structures (Grant, Short, & Turner, 2013). It often aims to move the readers to a desired change. In this article, it is anticipated that the reader will understand the experiences of a terminally ill patient in the context of contemporary health care, motivating medical practitioners to reposition their focus toward PCC principles with empathy and compassion. The PCC principles provide the framework for analysis, so the reader may understand how the principles are experienced through the eyes of a cancer sufferer in both an oncology and palliative care setting.

The rationale for using this approach is to seize the opportunity to reflect on the first author’s own lived experience as a cancer sufferer and use these reflections to promote positive change in the context of PCC. This article will address each of the eight principles of PCC and relate them to the first author’s personal experience, as she engaged with both oncology and palliative care services by means of anecdotal evidence.

The following sections will be written in the first person from the perspective of the first author as consistent with an autoethnographic approach. The first author will begin her findings by sharing her story as well as introducing herself as a researcher with a background in academia and university research.

Introducing Myself: My Story

For almost 2 years, I have endured increasing pain caused by breast cancer. I have what is called an “ulcerating wound”; an open wound where a tumor has broken through the skin and continues to grow and exudate. It is positioned in an awkward area to one side of my breast and is growing into my axilla. I was first diagnosed in 2013, being diagnosed as “terminal” from the outset. Aside from a preexisting cardiac condition that was well managed, I was healthy, vibrant, and enjoying a full life. As imagined, this news was devastating and incomprehensible and most unexpected. However, I was not prepared to face my mortality yet and immediately sought a cure.

The cancer has resulted in the development of lymphedema, a condition of severe swelling which limits my ability to move my right arm. In addition, the open wound causes a constant burning pain which significantly impacts my quality of life. Not only is the pain unbearable most of the time, but the constant increase of the wound size and exudate is depressive. As I also have a cardiac condition that would be impacted by undertaking chemotherapy, I have spent significant amounts of time looking at peer-reviewed literature to research alternative treatments. This will be discussed in more detail subsequently in this article. As mentioned, my cancer is diagnosed as terminal, and I have been linked into palliative care services; a difficult situation I have needed to adjust to.

Despite my diagnosis, it is important to note cancer is not all of who I am. I hold a Bachelor of Human Services Degree, and I am currently enrolled in an Honours program at (Griffith University). Besides working in the human services sector for many years, I have also worked within an academic setting on a variety of research projects and in student mentoring. Palliative care in an Australian context has been one significant research project I have been involved in. This places me in a unique position of being able to integrate my knowledge of the principles of PCC and the health-care context with my own experience with oncology and palliative care services.

As articulated in the literature review, the Picker Institute endorses eight principles of PCC. With the hope of promoting change for future cancer sufferers, in the following commentary, each PCC principle will be placed under the spotlight, and through an autoethnographic approach, I will draw on my own experiences in relation to each of these principles, serving as anecdotal evidence. PCC is highly important always, but particularly when one’s future is clouded with uncertainty. The comfort of having someone “hear” you is sometimes all you have.

Principle 1: Respect for Patients’ Values, Preferences, and Expressed Needs

This principle entails the patients’ involvement in all aspects of decision-making, recognizing this is the patient’s unique journey. They should be treated with dignity, respect, and sensitivity regarding their culture, values, and autonomy (Oneview, 2015). Cancer patients are vulnerable and will have many concerns regarding their treatment and anticipated outcomes. It is not uncommon for cancer patients to undertake research themselves as a means of understanding the disease and what is likely to occur.

On my cancer breaking through the skin and receiving a terminal prognosis, I organized a consultation with a surgeon to discuss tumor removal. The surgeon informed me this procedure was not an option until I had undergone chemotherapy. I expressed my concerns about chemotherapy in accordance with my research and the fact that I had a cardiac condition. The surgeon’s attitude and tone toward me became aggressive. I felt intimidated and that my preference to discuss other options was ignored. This resulted in me having to continue to research treatments myself as chemotherapy appeared to be the only treatment specialists were willing to discuss. I researched radiation and hormone therapy and put these forth as my preferred treatment options. I underwent these two treatments, however, the cancer continued to spread. The emphasis on chemotherapy was persistent, so I relented and began chemotherapy. Unfortunately, not long afterward, I became acutely unwell due to chemotherapy causing my heart to spasm, resulting in a 7-day hospital admission in the cardiac ward. On reflection, this vital PCC principle was not upheld. My value for open discussion, from one adult to another, my preference to consider other treatment options, and my expressed concerns regarding my cardiac condition were met with disregard and lack of cooperation.

Principle 2: Coordination and Integration of Care

Patients from the Picker Institute’s (1987) study identified that coordination between services can be problematic resulting in feelings of vulnerability and powerlessness (Picker Institute, 2010). Focusing on proper integration of care is one strategy that could alleviate patient anxiety.

A cancer patient will assume that health-care professionals collaborate and communicate with each other about the patient’s diagnosis and health-care plan. However, this is not the reality from my perspective. On more than one occasion, specialists disclosed to me that they did not have access to all my information or current reports. I was left explaining results to them. My experience in the cardiac ward revealed oncology services had not communicated with cardiac services regarding my condition and risks involved. I could readily identify with the Picker study that highlighted a lack of co-ordinated and integrated care results in patient frustration and a sense of powerlessness.

Principle 3: Information and Education

The Picker Institute (1987) study revealed patients often express a fear that they are not completely informed about their condition or information is being withheld (Overview, 2015). This principle places an emphasis on providing information that promotes autonomy and alleviates patient concerns by means of education. I was not well informed with psychoeducation regarding my condition. The majority of information I obtained was through my initiative, by asking specific questions and requesting copies of reports related to recent blood tests and computed tomography or positron emission tomography scans. Most of my knowledge was derived from my own research. Some may argue that I was empowered by doing my own research, which is in accordance with PCC. I would concede to this if the evidence-based literature I located had been acknowledged and pursued for open discussion and dialogue. Unfortunately, my findings were dismissed as irrelevant.

Principle 4: Physical Comfort

The Picker Institute’s (1987) study found patients identified pain management and activities of daily living as major issues of concern (Overview, 2015). The management of pain is my primary concern. The palliative care consultant made suggestions on medication and dosage and advised me that my general practitioner would continue to monitor my pain management. From my perception, the general practitioner appears to guess the type of medication and dosages based on my reported experiences. This has further enhanced my lack of confidence in my pain being adequately addressed. The pain management regime I am currently under appears to be an ad hoc, “try this, try that” approach. This approach to my pain has left a psychological impact, leaving me frightened about the future and how adequately my pain will continue to be managed.

Principle 5: Emotional Support and Alleviation of Fear and Anxiety

The need for attention to the patient’s anxiety levels regarding clinical status, treatment, and prognosis is the key focus of this principle (Oneview, 2015). Studies indicate that psychiatric comorbidity or psychological distress is prevalent among cancer patients, which will demonstrate itself in the form of adjustment issues, depressed mood, anxiety, impoverished life satisfaction, and loss of self-esteem (Passik & Kirsh, 2003). Ulcerating breast cancer wounds are rare, and the host is required to deal with leakage, odor, pain, and itching (Naylor, 2002). I can relate to the literature findings and outcome of the Picker Institute Study (2015) study; fear and anxiety around the nature of disease become distressing and significantly debilitating, leaving the patient vulnerable and unwilling to seek out psychological and emotional support.

On three occasions I was referred for counseling, which I willingly accepted. However, structural issues such as staff changes, geographic catchment amendments, and funding cuts have resulted in a lack of consistency with this type of assistance. Furthermore, my perception, based on one of the counselor’s reactions, is that they were overwhelmed with the complexity of my condition and how I cope with the enormity of this disease. While I recognize the health sector is often undergoing change, I would have preferred that one person was consistently available to me throughout this turbulent journey. There have been many times where I have felt afraid, alone, and depressed, questioning how long I have to live and what my quality of life will look like. I reside by myself and did not have any face-to-face family support (they live overseas). A counselor competent in working with terminally ill patients would be invaluable to me, particularly when I am experiencing moments of existential distress.

Principle 6: Involvement of Family and Friends

Findings from the study indicated patients continually addressed the role of family and friends in the patient experience, often expressing concern how the illness is impacting those around them (Oneview, 2015). Evidence indicates support for family members should be part of the care plan or at least the family’s needs should be recognized and inquired after. I have only a small social network; however, my few friends are supportive and assist where they can. I often noticed the feeling of helplessness they carry when watching me in such a difficult situation. My family live overseas, therefore, can only provide support through phone and e-mail. I attend most of my appointments alone and have never been asked about whether or not I would like someone to accompany me or if anyone in my social circle did have queries or need of support. Generally, I had to learn to rely on my own inner strength and resilience and draw on resources deep within myself in order to cope and survive until now.

Principle 7: Continuity and Transition

Patients often feel concerned regarding how they will cope and care for themselves after discharge from hospital. It is therefore imperative that understandable, detailed information regarding medications, physical limitations, and dietary needs is provided. A clear coordinated plan regarding on-going treatment and follow-up services after discharge should be in place. Information should also be provided regarding access to clinical, social, physical, and financial support on a continuing basis (Oneview, 2015).

Because I live alone I am concerned about what will occur in case of a medical emergency. There is no clear strategy regarding follow-up appointments, and I have not been provided with a structured health-care plan. I need regular dressings for the ulcerating wounds, and I once experienced an ominous comment from a nurse about funding continuity, which elicited feelings of hurt: I was informed that I had exhausted my palliative care funding and money for dressings could not continue. Although this matter was quickly resolved, it reiterated to me that palliative care funding arrangements are time limited with eligibility constraints. I was left feeling that I was wasting resources and that the financial cost to the medical service outweighed my care needs as a patient with an ulcerating, weeping wound.

Principle 8: Access to Care

This final principle involves the patient’s need to feel reassured that access to care whenever it is required will occur. Regarding access to care, on one occasion, I enquired about care services for lymphedema. Subsequently, I was linked to the occupational therapist for cancer outpatients. I discussed manual lymph drainage as a possible treatment option but was advised that this care service was not provided through the hospital due to lack of trained staff and funding. I was then provided with compression sleeves at no cost, and it was suggested to do the manual lymph drainage myself and alternatively, to find a private practitioner. The government offers a copayment for this care service covered under a chronic disease management plan, requiring a referral from a general practitioner. The government copayment covers about two thirds of the treatment fee and is paid only five times per calendar year. In many instances such as above, it was only due to my own initiative that I managed to obtain information about further accessible care services and not through health professionals involved in my care.

Persons living with a terminal illness continually wonder about time and how much they have left. Usually, I did not have to wait long to see certain specialists, I sometimes felt concerned that some health professionals did not seem to consider my situation with an attitude of urgency. Some appeared relaxed in their approach, stating things like “we will see you again in a few months’ time” even though they were aware of how much the cancer had ravaged my body, with more tumors continually appearing. I often feel confused about my condition after such responses, as I can see the cancer is advancing; however, this did not seem reflected in the practitioner’s approach to it.

Discussion of Findings

Living with terminal cancer has afforded me the motivation to research this topic and to understand the context of how oncology and palliative care services are administered. I understand that state-funded health-care reform was necessary considering health-care expenditure projections indicated there would be a disparity between revenue collected and health-care spending. The average patient is unaware of these contextual factors and is often left perplexed as to why they feel hurried or guilty for taking up too much of a specialist’s time. An inpatient will often feel that there is excessive talk of early discharge when they are still acutely unwell, or the outpatient may be feel hurt and burdensome when told that they have exceeded the time frame for funded services. Most patients do not understand the macrofunding arrangments and how they are administered at a local level. ABF is a foreign language to the average person, they only experience the effects of it when they engage with medical services, which often leave them perplexed.

The ABF model reforms have placed a heavy focus on PCC, with good intentions. As highlighted in the literature, PCC is linked to hospital performance and funding (Independent Hospital Pricing Authority, 2011; O’Reilly et al., 2012). Patients periodically are requested to fill out a satisfaction survey to provide evidence to hospital executives that an efficient and beneficial service is being offered. However, I believe many medical practitioners are poorly educated on how to administer PCC as illuminated in recent research (Miller, Slantez, Lourenco, Eisenberg, & Kung, 2016). My experience confirms findings from the literature that purports practitioners are aware of the concept of PCC but do not know how to implement the concept into practice (Kitson et al., 2012). To date, there remains a strong focus on the efficiency element of the health reform, with PCC being a forgotten component. For these reasons, I feel compelled to reflect on my experiences and write about the consequences of PCC not being adhered to from the viewpoint of being a cancer patient.

I took charge of my health and used my initiative to help myself, as patients are encouraged to do so in accordance with PCC. But what was missing was cooperation from the other parties; I needed the health professionals to respond to the efforts I had made and actively work with me and my preferences. There have been moments when I have become distressed in my search for answers to questions that appear to have no retorts. Through my own academic research and my personal experiences, I am therefore suggesting implications for health practitioners in oncology and palliative care practice to consider in their interactions with terminally ill patients. I want to stress that the voice of the patient must always remain in the center of all treatment plans, with their preferences being heard always as per the essence of the Picker principles (Oneview, 2015).

Implications for Health Practitioners

As indicated by my reflections, living with a terminal illness can be a harrowing experience, so I would therefore like to put forth some specific recommendations. PCC should not only be linked to performance and funding, it should be integral to day-to-day practice. However, as highlighted in the literature, health practitioners struggle with implementing PCC, as the training is not always provided or because organizational culture precludes its integration into current ways of working.

Once a patient is diagnosed with a serious and terminal illness such as cancer, fear and anxiety are most likely the first emotions the person experiences. A staff member with adequate training in PCC is likely to be more acutely aware of the needs and responses of a patient. This training is essential for all medical staff in all aspects of hospital service, however, particularly in oncology and palliative care services. Furthermore, self-reflective practices and monitoring mechanisms should occur in supervision to ensure PCC remains central to practice.

In addition, access to consistent psychological and emotional support throughout the disease trajectory along with support for other psychosocial stressors would be optimal. Social workers are well equipped for this role due to their training, ethical framework, and theoretical approaches. Due to the diverse manifestations of the social work role, these health professionals have a particularly good understanding of the ways in which social policy impacts on organizations and on health-care delivery. In addition, social workers understand the benefits and importance of multidisciplinary approaches in interdisciplinary teams, ensuring that all disciplines are communicating clearly and effectively to meet the needs of the patient. Persons with fungating breast cancer can experience depression, overwhelming feelings of stress , and despair about the impact on their femininity and intimacy (Tandler & Stephen-Haynes, 2017). I have experienced all of these responses and have mostly drawn on my own inner resources to address them. A skilled and competent social worker adequately trained in PCC would have likely assisted to alleviate some of the anxieties I have endured.

A health professional caring for a terminally ill patient should also be aware that, although not verbalized, time remaining is a constant concern. Organizing referrals or follow-up appointments should be undertaken with a sense of importance and haste. In addition to actions, this sense can be demonstrated through nonverbal communication such as posture, tone of voice, and facial expressions. The patient concerned with mortality and time remaining will want to feel like something is happening in a judicious manner. A persons’ health status can alter from moment to moment; therefore, concerns need to be treated with urgency.

To help assist with how to deal with psychosocial stressors for palliative care clients, education and training on psychosocial care should become a condition of employment for all staff including medical practitioners and specialists to identify the needs of terminally ill patients and how best to address. A program that provides both medical and allied health staff with the knowledge and skills to competently address psychosocial needs of palliative patients should be designed and implemented if it is not in existence. This would complement training received in relation to PCC.

PCC is an integrally important philosophy of care and the benefits for patients and health professionals are significant. Keeping the patient in the center as an important driver of the care plan, there would be fewer consumer complaints, which take time and resources to follow-up, meaning efficiency and outcomes are positively impacted. There is also a benefit to staff who have likely entered the medical profession due to motivations relating to caring and giving. If health professionals feel equipped on how to effectively engage patients to contribute to their care, job satisfaction will be enhanced as will sustainability and retention. In the context of ABF, it is therefore essential that PCC becomes just as prominent as “efficiency and outcomes,” with the patient always remaining as the name suggests—in the center.

Limitations

It is recognized from the literature that there are specific limitations to utilizing an autoethnographic case study approach, which include generalizability of the findings (Nurani, 2008). Furthermore, feelings evoked in readers may be unpleasant, an unpredictable issue for an author to predict (Mendez, 2013). However, this article would argue that the first author’s lived experience has provided depth and a sense of “realness” to a particular phenomenon that may not have been attained if an alternative research methodology was utilized.

Conclusion

An autoethnographic case study approach was used in this article to explore the first author’s experience with both oncology and palliative care services. The significance of each of the eight PCC principles was scrutinized by drawing on the perception of the first author who was living with terminal fungating breast cancer at the time of writing but has sadly passed away from the illness. It was argued that adherence to the principles can have a significant impact on how patients experience their journey with cancer. This will be encountered as positive or negative. The literature also revealed that ABF models promote PCC as being connected to progressive fiscal outcomes for hospital services. However, the findings do conclude the component involving PCC appears overlooked in the ABF model. Health professionals need to know “how to” administer it if they are aiming for optimal patient care, meaning funding for such education opportunities needs to be addressed. PCC cannot resolve every health practitioner or patient interaction discrepancy, but the importance of it has been illuminated both within the literature and by the case study. The article provided several recommendations for health professionals to ensure principles of PCC always remain in focus and that cancer sufferers have their preferences heard and values respected.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Anke Condon graduated with a Bachelor of Human Services in 2015. She then enrolled into a Bachelor of Human Services (Honours) program with the aim of undertaking research relating to palliative care. Unfortunately, Anke was diagnosed with terminal breast cancer and could not complete her Honours program. However, she did write this paper with her Honours supervisor, Lise Johns, and lecturer, Polly Chester. Anke passed away on May 16th, 2017, 1 week after the paper was completed.

Lise Johns graduated with a Bachelor of Social Work in 2007 from Griffith University with First Class Honours. From 2007 – 2014, Lise has worked as a hospital social worker, first in a mental health unit and then as a generalist social worker in a small, rural hospital. It was during her time as a generalist social worker that she began to work extensively with palliative care clients. Lise undertook a PhD in 2010, researching psychosocial needs of palliative clients living in rural and remote areas. Since graduating from her doctorate studies in 2014, she has been working as a lecturer and researcher at Griffith University. Her research area and interests, remain primarily in the area of palliative care and improving quality of life for those living with a life limiting illness.

Polly Chester graduated with a Bachelor of Social work from Griffith University in 2014 with First Class Honours. From 2015, Polly began working as a tutor, lecturer and researcher at Griffith University, combining a primary research focus on the implementation of complex interventions in mental health practice and teaching Interpersonal Skills for emerging allied health clinicians. More recently, at a busy regional hospital, Polly took a clinical social work post in specialist palliative care social work, continues to combine this with lecturing at Griffith University and has an emerging research interest in improving interprofessional practice approaches in palliative care multidisciplinary teams.

References

Australian Commission on Safety and Quality in Healthcare. (2011). Patient-centred care: Improving quality and safety through partnerships with patients and consumers. Retrieved from https://www.safetyandquality.gov.au/wp-content/uploads/2012/03/PCC_Paper_August.pdf

Bardes

C. L.

(2012). Defining “patient-centered medicine.” New England Journal of Medicine, 366(9), 782–783. doi:10.1056/NEJMp1200070

Barry

M. J.

Edgman-Levitan

(2012). Shared decision making—The pinnacle of patient-centred care. New England Journal of Medicine, 366(9), 780–781. doi:10.1056/NEJMp1109283

Bauman

Fardy

Harris

(2003). Getting it right: Why bother with patient centred care? The Medical Journal of Australia, 179(5), 253–256. Retrieved from https://www.mja.com.au/journal/2003/179/5/getting-it-right-why-bother-patient-centred-care

Cancer Council Australia . (2018). Treatment. Retrieved from https://www.cancer.org.au/about-cancer/treatment/

Carlström

Ekman

(2012). Organisational culture and change: Implementing person-centred care. Journal of Health Organization and Management, 26(2), 175–191. doi:10.1108/14777261211230763

Dambha

Griffin

Kinmonth

(2015). Patient centred care in general practice. InnovAiT, 8(1), 41–46. doi:10.1177/1755738014544482

Ellis

Adams

Bochner

(2011). Autoethnography: An overview. Forum Qualitative Research, 12(1), 1–12. Retrieved from http://www.qualitative-research.net/index.php/fqs/article/view/1589/3095

Epstein

Fiscella

Lesser

Strange

(2010). Why the nation needs a policy push on patient-centred health care. Health Affairs, 29(8), 1489–1495. doi:10.1377/hlthaff.2009.0888

10.

Epstein

Street

(2011). The values and value of patient-centred care. Annals of Family Medicine, 9(2), 100–103. doi:10.1370/afm.1239

11.

Fallowfield

Jenkins

(1999). Effective communication skills are the key to good cancer care. European Journal of Cancer, 35(11), 1592–1597. doi:10.1016/S0959-8049(99)00212-9

12.

Grant

Short

Turner

(2013). Introduction: Storying life and lives. In Short

Turner

Grant

(Eds.), Contemporary British autoethnography (pp. 1–17). Rotterdam, the Netherlands: Sense Publishers.

13.

Hall

(2008). Looking to improve financial results? Start by listening to patients. Healthcare Financial Management, 62(10), 76–80. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/18839668

14.

Independent Hospital Pricing Authority. (2011). Activity based funding for Australian public hospitals: Towards a pricing framework. Retrieved from https://www.ihpa.gov.au/sites/g/files/net636/f/publications/activity_based_funding_for_australian_public_hospitals.pdf

15.

Kaur

Mohanti

(2011). Transition from curative to palliative care in cancer. Indian Journal of Palliative Care, 17(1), 1–5. doi:10.4103/0973-1075.78442

16.

Kitson

Marshall

Bassett

Zeitz

(2012). What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing, 69(1), 4–15. doi:10.1111/j.1365-2648.2012.06064.x

17.

Leonardsen

Grøndahl

V. A.

Ghanima

Storeheier

Schönbeck

Løken

T. A.

, . . . Jelsness-Jørgensen

L. P.

(2017). Evaluating patient experiences in decentralised acute care using the Picker Patient Experience questionnaire, methodological and clinical findings. BMC Health Services Research, 17, 685–696. doi:10.1186/s12913-017-2614-4

18.

Medical Oncology Group of Australia. (2009). Welcome to Medical Oncology Group of Australia . Retrieved from https://www.moga.org.au/about-moga/welcome

19.

Mendez

(2013). Autoethnography as a research method: Advantages, limitations and criticisms. Colombian Applied Linguistics Journal, 15, 279–287. Retrieved from http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0123-46412013000200010

20.

Miller

Slantez

Lourenco

Eisenberg

Kung

(2016). Teaching principles of patient centred care during radiology residency. Academic Radiology, 23(7), 802–809. doi:10.1016/j.acra.2016.01.021

21.

Mills

Durepos

Weibe

(2010). Encyclopedia of case study research. London, England: SAGE.

22.

Naylor

(2002). Part 1: Symptom control in the management of fungating wounds. Retrieved from http://www.worldwidewounds.com/2002/march/Naylor/Symptom-Control-Fungating-Wounds.html

23.

Nurani

L. M.

(2008). Critical review of ethnographic approach. Jurnal Sosioteknologi, 7(14), 441–447. Retrieved from http://journals.itb.ac.id/index.php/sostek/article/view/1004/613

24.

Oneview. (2015). The eight principles of patient centered care. Retreived from https://www.oneviewhealthcare.com/the-eight-principles-of-patient-centered-care/

25.

O’Reilly

Busse

Hakkinen

Street

Wiley

(2012). Paying for hospital care: The experience with implementing activity-based funding in five European countries. Health Economics, Policy and Law, 7(1), 73–101. doi:10.1017/S1744133111000314

26.

Passik

Kirsh

(2003). Anxiety and adjustment disorder. New York, NY: Oxford University Press.

27.

Picker Institute. (2010). Long-term improvement guide. Retrieved from http://planetree.org/wp-content/uploads/2015/05/LTC%20Improvement%20Guide%20For%20Download.pdf

28.

Rathert

Wyrwich

Austin Boren

(2012). Patient centred care and outcomes: A systematic review of the literature. Medical Care Research and Review, 70(4), 351–379. doi:10.1177/1077558712465774

29.

Sparkes

(2000). Autoethnography and narratives of self: Reflections on criteria in action. Sociology of Sport Journal, 17, 21–43. doi:10.1123/ssj.17.1.21

30.

Tandler, S., & Stephen-Haynes, J. (2017).Fungating wounds: Management and treatment options. British Journal of Nursing, 26(12), 6–14.

31.

Ulin

Malm

Nygardh

(2015). What is known about the benefits of patient centred care in patients with heart failure. Self Care and Health Outcomes, 12(6), 350–359. Retrieved from https://link-springer-com.libraryproxy.griffith.edu.au/article/10.1007%2Fs11897-015-0272-6

32.

Wall

(2008 ). Easier said than done: Writing an ethnography. International Journal of Qualitative Methods, 7(1), 38–53. Retrieved from https://journals.library.ualberta.ca/ijqm/index.php/IJQM/article/view/1621

33.

World Health Organization. (2002). WHO definition of palliative care. Retrieved from http://www.who.int/dsa/justpub/cpl.htm