Date Published: July 7, 2016
Publisher: Public Library of Science
Author(s): Eva K Masel, Anna Kitta, Patrick Huber, Tamara Rumpold, Matthias Unseld, Sophie Schur, Edit Porpaczy, Herbert H Watzke, Toru Hosoda.
The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician.
The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques.
The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment.
The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care.
Palliative care involves a multidisciplinary and individual approach, consisting of professional care in the form of optimum symptom control, psychosocial and spiritual care and support in the organization of everyday life. Palliative care is known to improve quality of life, but the patient’s referral to a palliative care unit is still hindered by several barriers, including lack of ward capacity and the unwillingness of physicians to refer their patients into this type of care [1–6]. In Austria, palliative care is at the moment insufficiently represented, as only a low percentage of patients can have access to a palliative care unit. Besides structural, administrative, and economic reasons, there are several other factors contributing to the underrepresentation of palliative care in health politics. These include both patients and physicians‘ uncertainties about its exact purpose, physician‘s uncertainty concerning the prognosis of the patients and emotional barriers of some physicians to initiate end-of-life-conversations due to the fear of undermining the patient’s hopes of recovery . From our experience as palliative care physicians, patient’s referral to our unit occurs much too late, as we see that patients on our waiting list often die before having the chance to be admitted to the palliative care unit. Recent studies addressing public awareness of palliative care show that members of the public identify palliative care with caring for people who are dying and ensuring their comfort in the terminal phase of their lives. Expectations of carers concerning palliative care have also been investigated, showing that advance care planning and positive communication may help to optimize the care of severely ill patients, and additionally support their relatives [8–10]. However, we know far too little about the patient’s view of palliative care. Just a handful of studies have been published in this field, and these were focused on the preferred place of death, communication, and the influence of cultural backgrounds [3, 11–17]. Patients’ preferences in palliative care revealed four key aspects: living a meaningful life, responsive health care personnel and care environment, and responsiveness in the organization of palliative care . Since a large percentage of cancer patients may be expected to have palliative care needs, it is imperative to know more about what those patients expect from their ward and the attending medical staff [12, 13, 19]. In Austria, specialized hospice and palliative care have not yet been fully integrated into the traditional health care system. Austrian palliative care units are small, hospital-based units comprising 8 to 14 beds. Focused primarily on cancer patients, their principal task is to support patients with advanced cancer and their caregivers until the patients can be discharged from the hospital. Nevertheless, according to the European Association for Palliative Care (EAPC), mortality rates in Austrian hospitals are as high as 25%. A distinct feature of hospices—unlike palliative care units—in Austria is that they are not regularly funded by the state. Their purpose is to accompany the patients in the final phase of life until their death. Given the small number of hospice beds, a mere 10% of the patients die in hospices . The present study aimed to investigate how much patients know about their upcoming palliative care, their expectations and needs when being admitted to a palliative care unit, how patients define a good palliative care physician and how their attitude changes during admission. The data were analyzed and the results discussed with a view to preparing patients as well as caregivers prior to admission to a palliative care unit.
This study employed a qualitative design using semistructured interviews. The interviews were conducted using a number of predetermined open-ended questions (Table 1). The method permitted the participants to respond in their own words and set their own emphases while providing a frame of orientation and not omitting important issues. At the end of each interview, the interviewer ensured that all topics had been addressed during the interview .
The analysis of the interview transcripts revealed four themes: information about palliative care (theme 1), supportive care needs (theme 2), being treated in a palliative care unit (theme 3), and qualities required of palliative care physicians (theme 4). The themes jointly address the patients’ expectations and perceived needs when being admitted to a palliative care unit and their concept of a good palliative care physician.
The present qualitative study revealed the patient’s view of palliative care. To our knowledge, this is the first study which sought to explore and identify patients’ previous knowledge of palliative care, their expectations and needs when being admitted to a palliative care unit, their experiences one week after admission and their perception of a good palliative care physician. This report is focused on a hitherto poorly researched topic, now addressed under difficult circumstances with patients who were severely ill . However, our study participants had a median Karnofsky performance status scale (KPS) of 60%. In other words, they needed occasional assistance but were able to care for most of their personal needs . Prior knowledge about hospices was common in our study group. The results of our study show that the patients could not distinguish hospices from palliative care units and lacked information about the purpose of a palliative care unit at the time of their admission. In Austria, palliative care units provide treatment ahead of discharge while hospices attend to patients in the final phase of their lives until death . Some interviewees perceived the palliative care unit as a hospice or a unit where they would probably die, a few thought they were being admitted to the wrong unit, while some thought it was a unit for recuperation and symptomatic relief. The fact that 50% (10 out of 20) of patients were not informed about the exact purpose of their stay at the palliative care unit suggests that communication should be optimized and more education and information provided . Many patients were feeling that a palliative care unit would be kind of a “last unit” or a “death ward”. Therefore, some patients might feel lost and hopeless when being admitted to a palliative care unit. Also, some physicians are concerned about decrements in the emotional well-being of their patients by admitting them to a palliative care unit. Since hospice beds in Austria are not regularly state funded, the large part of palliative care is undertaken in dedicated units integrated into comprehensive cancer centers. It is known that early palliative care should be encouraged and may even improve the prognosis [2, 5, 28]. Therefore, the patients should be given timely information about palliative care in order to improve their access to palliative care services and be admitted early to palliative care [29, 30]. The core competences in palliative care include communication, shared decision-making, symptom management, and preserving quality of life [31–34]. Another aim of this study was to explore the patient’s care needs from their point of view. Besides symptom management and honest and attentive communication, patients expressed a major supportive care need regarding help in social concerns. It was especially important to the patients to regulate financial issues, gain support for their home environment and unburden their caregivers. This highlights the importance for a deeper integration of social workers in palliative care units. Patient satisfaction and developing a patient-physician relationship also relates to available time resources . Our study yielded findings concerning major social and emotional skills that patients expected of a palliative care physician: honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. In addition to professionalism, the patients obviously desired a more personal relationship with staff. In our study, patients expressed their need for honest communication, which is in accordance to previous findings from the literature . However, herein lies a barrier in the patient-physician communication, since some physicians still fear that by breaking bad news the patients will be discouraged and lose hope. Our recommendation is to adapt the quantity of information to the patient’s and caregivers individual desire . The published literature about patient perspectives on prognosis and end-of-life issues emphasizes that some patients desire information while others do not. However, it is also known that the patient-physician relationship is not adversely affected by raising these issues [38–44]. The challenge is to be true and give hope without raising false hopes. Knowing about what patients do expect from a good palliative care physician as shown by our findings is very important. It should further encourage healthcare professionals in helping to alleviate patient’s fears by taking time, listening, communicating openly and in this way make it possible for the patients to redefine their hope on a goal other than cure . Being compassionate, empathetic and attentive while interacting with patients and their caregivers should be regarded as a clinical skill and may be interpreted as a medical attitude. The second interview conducted after one week revealed that the patients perceived their stay in a palliative care unit as a largely positive experience. Due to this finding, healthcare professionals should inform their patients about the purpose of a palliative care unit in a timely manner and encourage them by telling them that many patients do benefit from a palliative care treatment. The study participants reported that their condition had improved because they received symptom management and were able to talk to members of the palliative care team. They also realized that the purpose of their admission was to achieve their discharge from the hospital. The fact that some patients were overwhelmed by too intensive treatment should raise the awareness of treating physicians to repeatedly reconsider their therapeutic strategies. Our findings provide solid evidence what patients do expect from a palliative care unit and that they mostly benefit from their admittance to the palliative care unit while their knowledge about the aim of palliative care units is still limited.
This study identified patient’s perspectives on palliative care as well as qualities required of palliative care physicians as reported by the patients. The findings of the present investigation should help to educate future palliative care professionals. Healthcare professionals should provide information about palliative care and ask for the patient’s pre-existing knowledge about palliative care. A sensitive approach that takes the needs of patients into account will help to eliminate misconceptions about palliative care.