Quality in Palliative Care from the Patient Perspective

Abstract

Patients with life-threatening illnesses who face death may suffer physically, psychosocially, and spiritually. The constant presence of illness and episodes of worsening illness is a persistent reminder of forthcoming death and can lead to feelings of fear. Existential issues may arise in addition to the physical suffering. Patients’ approaches to life, illness, and ideal quality of life were found to create a sphere of influence that shaped their palliative care experience. Especially at the end of life, patients’ preferences for help in living a meaningful life are connected to the aim of palliative care “to improve quality of life,” which includes the patients’ perspectives of what is considered meaningful and important. Patients’ perceptions of their care may be seen as an indicator of quality of care and is considered important for the development and improvement of palliative care.

1. Introduction

Contemporary palliative care aims to relieve patients’ “total pain” and improve their quality of life, based on the holistic view that suffering is physical, psychosocial, and spiritual [1, 2]. Palliative care includes holistic care principles according to which the individual patient is at the center of care. These principles are respectful and sensitive to the conditions of the patient and take into account the opinion of the family and the team. Life history, preferences, needs, and values, as well as the patient’s knowledge, are combined with the abilities of the health personnel in order to provide the patient with the best possible care [3].

Patients may have a wide variety of care needs at the same time, which is related to their personality, education, cultural background, religious and spiritual beliefs, expectations from life, family relationships, financial opportunities, variety and stage of their disease, symptom burden, care environment, and care burden. If palliative care is not well integrated into health systems, it is inevitable to encounter difficulties in meeting these needs. However, if all maintenance environments are ready and maintenance transitions can be made smoothly, continuity can be ensured.

While the number of patients who continue to live with life-threatening diseases increases, efforts to provide palliative care services to everyone equally and to improve existing systems continue. These efforts should continue until ideal quality palliative care organizations are provided in theory and clinical practice.

2. Quality of health care in general

Quality of care in general health services is defined by six dimensions: it must be safe, effective, patient-centered, timely, efficient, and equitable [4]. The two main elements that comprise quality of care are the preferences of the patients and the resource structure of the care organization. It is order and predictability in the rational domain that determines patient preferences, and consideration of their unique situation in the human domain. The resource structure of the care organization is formed by the caregiver team and the infrastructure of the care environment. In this theoretical framework, patients’ perceptions of quality of care can be considered in four dimensions: the medical-technical competence of the caregivers, the physical-technical conditions of the care institution, the identity-oriented approach of the caregivers, and the sociocultural atmosphere of the care organization [5].

2.1 Perception of health care quality

Patients’ preferences and perceptions of care have been acknowledged as being important components of health care quality [6]. Patients’ perceptions of quality of care can be explained by patients’ assessments of what they perceive as important about their care, their preferences, and how they perceive their care experience, all of which differ from patient satisfaction, which is defined as an emotion. Patient satisfaction indicates adequate and acceptable care, not perfect care, and is a relative concept so that care that satisfies one patient may not satisfy another [7]. In order to validate patients’ perceptions of the quality of care, it is important to ask questions about aspects of care that are important to patients.

Personalities and institutional conditions may affect patients’ perceptions of the quality of care. Person-related conditions include patient characteristics related to sociodemographic information such as age, education, and living conditions, as well as health-related information, such as diagnosis and quality of life. Relatively few studies have investigated the association between patients’ perceptions of subjective importance and person-related conditions, especially in the palliative care context, and therefore the relationships between them are uncertain. Several studies have investigated the relationship between person-related conditions and patients’ perceptions of the care they received. Although the relationship between age and subjective importance is contradictory or unclear [8, 9, 10], subjective importance is reported to be higher in women than in men [8, 11].

Person-centered care is an important part of the quality of care. However, we do not yet have data showing the effect of person-centered care on patients’ perceptions of quality of care. It may not be possible to change individual circumstances, but it is important to explore them in order to target and individualize care for patients who are at risk of adverse experiences with quality of care. Health care providers should aim to improve conditions that negatively affect patients’ perceptions of the organization.

Different results have been reported regarding the importance of patients’ subjective perceptions of health status, including both physical and mental health, and the relationship with patients’ sense of coherence [8, 10]. In one study, a positive correlation between psychological well-being and subjective importance was found [11]. Studies in the context of palliative care have reported that perceived actual care is better in the presence of a cancer diagnosis compared with nonmalignant diseases [12, 13]. Similarly, patients with chronic obstructive pulmonary disease preferred a lower level of advanced care compared to cancer patients [14].

Although it is known that patients living alone and with a life-threatening illness may experience care differently from those living with someone else [15, 16], there is insufficient data on the perceptions of care of those who live alone and lack the affection of family and friends [17]. While some studies evaluating the perception of care in hospital- and nursing-home environments that did not include palliative care patients found a positive relationship between the number of personnel and the quality of care [18, 19], in another study, the number of nurses in the services and the service occupancy rates were higher, but it was evaluated as a negative situation in terms of the sociocultural atmosphere [20].

2.2 Perception of palliative care quality

Despite global efforts to improve health and palliative care integration, barriers to optimal delivery of palliative care services remain. Referrals to palliative care are unfortunately made too late, when patients are in the final stages of their illness, causing some opportunities to be missed [21, 22, 23]. Common barriers to timely referral to palliative care include the inability to accept a diagnosis of an incurable disease, clinicians’ unwillingness or inability to communicate bad news and discuss palliative care, negative biases by patients, families, and clinicians toward palliative care, and a lack of information about the purpose or scope of palliative care and palliative care services [24, 25]. Regarding negative perceptions, research shows that patients, families/caregivers, and clinicians still largely associate palliative care with end-of-life care, sometimes viewing it as a “last resort” or “hope lost” [26, 27]. These negative perceptions about palliative care affect the quality of care and prevent patients and caregivers from benefiting from supportive treatments. The development of quality palliative care services requires a broad, multifaceted approach targeting all levels of society, not just patients and clinicians, involving awareness, education, communication, and the implementation of policies that support access to palliative care services [28, 29].

In palliative care, patients are faced with numerous severe symptoms that impair their quality of life. In particular, pain can be perceived as worse than death for patients. Effective pain control is one of the most important indicators of quality palliative care. The pain that prevents patients from living their lives with dignity should be treated immediately. It is inevitable that the perception of care will be negatively affected in cases of uncontrollable symptoms that impair the quality of life of the patient and the caregiver family. Palliative sedation should be discussed with the patient and/or family in cases of uncontrollable symptoms such as treatment-resistant pain, dyspnea, and delirium. A lower symptom burden in patients with advanced incurable disease has been found to be associated with higher quality of care [30]. The use of systematic symptom assessment and documentation provides better symptom control. At the same time, documenting patient information improves the overall quality of care [31, 32]. In palliative care, the use of assessment tools such as the individual care plan, patient care records, and the Edmonton Symptom Assessment Scale (ESAS) for systematic assessment and documentation of specific symptoms are essential for guiding and improving care. Care environment transitions compatible with the nature of the support can be achieved more easily by informing and planning the care in advance. At the same time, emergency service applications that cause stress to the patient and their relatives can be prevented. In the context of palliative care, planning and continuity of care are extremely important for patients [33]. More information is needed on how the organization of medical and nursing care affect patients’ perceptions of palliative care.

In a study conducted to determine patients’ own definitions of quality of care, the properties used to describe quality of care were patient-centered care, access, communication and information, courtesy and emotional support, care efficiency/effective organization, technical quality, and structure/facilities [6]. Similarly, in another study, effective communication and joint decision-making, specialized care, respectful and compassionate care, trust and confidence, a suitable environment for care, and minimizing the patient burden were determined as the most important elements of care [34].

Cognitive, emotional, physical, preparatory, social, and spiritual domains, as well as personal autonomy and health care delivery, are important quality of life parameters for people with a life-limiting illness receiving palliative care [35]. In palliative care, patients may experience progressive loss, increasing disability, difficulties in coping with symptoms, and uncertainties about prognosis. The balance between controlling their own lives and putting themselves in the hands of others is important in maintaining the values that make up their identity. When it comes to shared decision-making, it has been found that most patients do not experience inclusion in care according to their preferences [36]. In palliative care, patients should be approached with honesty, respect, and empathy, the planning of services should be conducted cooperatively, and patients’ preferences should be considered in providing a safe and enjoyable environment for medical care.

There are several reviews that explore areas of care that are important to patients in the context of palliative care. In a study evaluating the palliative care perceptions of patients, it was found that care needs were met in home-care settings, but spiritual, psychosocial, practical, information, and rest needs were not met, and there was a loss of isolation and autonomy [37]. It has been reported that the environment in hospital palliative care is not suitable due to poor management of symptoms, too many interruptions, and noise [38], but patients who attended palliative day care centers reported that the environment and psychosocial experiences were positive [39, 40]. In two studies focusing on hospital and hospice environments intended for elderly patients receiving palliative support and their families, it was emphasized that patients prefer a home-like environment next to their families, where their privacy is protected [41, 42].

The competence of doctors and nurses in palliative care positively affects the perception of care received [30, 43]. It has been reported that patient families’ perceptions of quality of care increase positively when specialized palliative care is provided [44]. Patients and caregivers who received specific palliative care interventions in terms of continuity, coordination, and care-location transitions reported better quality of care [45]. In palliative care, the presence of a specialized team such as psychologists, social workers, occupational therapists, spiritual support specialists, clergy, doctors, and nurses increases the quality of care. However, the relationship between diversity and functionality of team members and perceptions of quality of care is unknown.

3. Death and the perception of a good death

The perception of death, which overlaps with the social and cultural identity of the individual, plays a decisive role in the integration with the society lived in all societies and cultures. Today, with the developments in medicine and technology, death is delayed and is preceded by increasingly longer end-of-life periods. The definition of a good death can comprise awareness of death, preparation for death, abandonment of roles and responsibilities, and farewell. Similar expressions such as “die well,” “die peacefully,” “proper death,” “desired death,” or “death with dignity” are used synonymously in the scientific literature. Studies have shown that the concept of a good death is different for patients, caregivers, doctors, and relatives [46, 47]. At this point, the importance of advanced care directives declared by the patient is obvious. However, since there is little research on what is important and what patients think at the end of their lives, discussions on the topic tend to be driven by academic and clinical perspectives [48].

What constitutes a good death for each person is highly individual, may change over time, and is based on personal perspectives, cultural contexts, and experiences gained through life stories. For many, a good death often comprises personal qualities that are considered important such as pain and symptom control, preparation for death, spirituality, a subjective sense of closure at the end of one’s life, and maintaining clear judgment [47, 49, 50]. However, what patients consider a “good death” is heavily influenced by culture, religion, age, living conditions, illness, and financial issues.

There are significant differences, and sometimes contradictions, in the preferences and issues that concern people, even if they have similar qualities. As a result of these choices, suffering may be experienced when facing death. For example, control of pain and physical symptoms is universally accepted as contributing to a good death. Consequently, in societies where access to health care or medication is socioeconomically limited, concerns focus on pain relief [51, 52, 53]. In societies where access to health is assured, aspects such as participation in treatment decisions seem to be given more importance than pain control [54, 55].

Although the quality death environment that individuals define for themselves may vary, it can be supplemented by a palliative care philosophy. Giving patients a chance to express their experience of aspects of a good death at different points in the illness/death trajectory can help improve the quality of care they receive, thus contributing to the overall quality of death [56]. It is also important to determine the performance and prognosis of the patient related to the disease in order to determine the appropriate time to talk about death and the preferred death environment with the patient. Death is not usually instantaneous; rather, it is a process and choices regarding death need to be carefully monitored throughout the course of the disease. Therefore, end-of-life support and care must address individuals’ ideas and wishes in flexible and dynamic ways on an ongoing and individual basis. Health care professionals should be aware of their own value systems and recognize the risks of imposing their own accepted concept of a good or bad death on the patient [57, 58]. In providing care and support to the dying, efforts should always be made to explore the specific societal conditions, problems, conflicts, and social inadequacies that prevent people from dying as they please.

4. Conclusion

Patients’ perspectives on their care are extremely important in assessing and further developing quality in health care in general and in palliative care in particular. However, studies involving patients’ perspectives on care are still scarce in palliative care research, often due to patient vulnerability and difficulties in obtaining informed consent. For this reason, family members are often used as proxies to investigate patients’ views on their care. One advantage of using relatives as proxies is the opportunity to include the views of terminally ill patients who are unable to communicate their perceptions of quality of care. However, subjective aspects of patients’ experiences, such as pain, anxiety, depression, and perception of the importance of care, cannot be evaluated with information received from the family. Studies comparing patients’ perceptions of important aspects of care with the care actually received are also scarce.

Areas that need improvement for the development of palliative care include relief of symptoms, psychological and moral support, improved relationships with physicians, participation in decision-making, honest communication, planning, cooperation and continuity of care, reduced family burden, and avoidance of life-prolonging interventions when there is no hope of recovery. There is a need for more studies investigating palliative care perceptions in all care settings, especially in hospice settings, home care services, and in patients diagnosed with cancer and non-cancer diseases.