Opportunities for the development of palliative care and its impact on quality of life

Opportunities for the development of palliative care and its impact on quality of life Introduction

Palliative care was in essence carried out as informal activity for centuries, and only in the twentieth century was it recognized as a specialized activity. The demand for palliative care specialists is constantly increasing because it has been proven that palliative care clearly improves the quality of life of patients who are dying. (Quill, Abernethy, 2013) We should note, however, that current palliative care suffers from an identity problem. It is known, and even striking, that, for example, 70% of Americans describe themselves as people who are not informed about palliative care and that it is a type of care associated with the very end of human life.1 This view is not far removed from current medical practice, because palliative care is managed by clinical physicians with specialist knowledge in palliative medicine and is mainly offered through hospice care. We see the limitation of palliative care in the fact that most patients ignore the fact that if they face a serious fatal disease, they receive different care in hospital than in a hospice. According to Parikh, it is important to ensure that patients receive the best care throughout the trajectory of their illness, and he adds that palliative care should begin together with standard care in patients with serious, life-threatening illnesses. The wider public, however, must understand the basic difference between palliative care and hospice care. (Parikh, 2013)

Fabuš defines palliative medicine as a conceptual system and, in fact, as a treatment strategy in the setting of incurable diseases. In such an understanding of palliative medicine, we can characterize palliative care as comprehensive care for those individuals whose disease does not respond to classic curative treatment. Thus, the object of palliative care becomes patients in the pre-terminal stage of their disease who undergo palliative care in order to prolong and improve the quality of their lives. According to Fabuš, this care has three forms: continuous care performed in the pre-terminal stage, terminal care provided in the terminal stage, which may transition into hospice care quality, and hospice care performed only in the terminal stage at the request of the patient.

Hospice care is a philosophy with a defined care program focused on groups of incurably ill patients in the dying stage and their families and close ones also in the post-mortem period. A basic difference is that palliative care is needed for all chronically ill persons, including those dying, and is performed mainly in healthcare facilities. Hospice care, on the other hand, is reserved only for dying patients with limited life expectancy. (Fabuš, 2012) According to Parikh, hospice care is exclusively for patients who are willing to forgo curative procedures and whom physicians estimate to have a life expectancy of six months. Palliative care, by contrast, is not limited by life expectancy estimates made by physicians or by patients' own beliefs about preferences for medication or other treatment procedures. According to the definition of the American Cancer Society Center for Palliative Care, palliative care is appropriate at any age and in any stage of serious illness and can be provided alongside curative treatment. Even though there are significant differences between hospice and palliative care, especially with respect to prognosis limits and use of treatment therapies, most palliative care currently is available at the end of life. This association of palliative care with death has led the public to marginalize palliative care itself. (Parikh, 2013) According to Kelley and Meierl, palliative care includes assessment and treatment of symptoms, support for decision-making, and help with appropriate treatment within the context of the goals of the patient and family. Palliative care is provided also within hospices (so-called hospice palliative care), but also outside of them, which we refer to as non-hospice palliative care, which, unlike hospice palliative care, offers treatment therapies together with life-prolonging care for people with serious, complex, life-threatening illness. Hospice palliative care becomes suitable when patients are in the period of a few weeks to months before death. (Kelley, Meierl 2010)

According to the most recent research, palliative care should be expanded and should be part of treatment even in earlier stages of disease, not only in the terminal stage. As in every medical field, some core elements of palliative care require specific skills that are becoming increasingly complex and require years of training, learning, and practical application. These include mainly family meeting facilitation, targeted techniques to reduce existential anxiety, and communication management. At present, when palliative care is recognized as a specialized field, the optimal solution appears to be to train specialists who will make decisions about all aspects of palliative care, but this model also has drawbacks. First, growing demand for palliative care may outpace the supply of providers. Second, many components of palliative care can already be carried out by existing professionals or even general physicians regardless of specialty, and adding another specialist team that addresses all dying-related suffering may unintentionally disrupt existing therapeutic relationships. Third, if palliative care specialists take on all palliative tasks, primary care physicians and other specialists may begin to believe that basic symptom management and psychosocial support are not their responsibility, and care may become fragmented. Therefore, Quill and Abernethy suggest that in a time when many people live longer and bear a greater burden of disease, a model should be created that includes both generalist and specialist palliative care. Subsequently, these models can coexist and complement each other. The authors are convinced that each medical specialty (oncology, cardiology, intensive care, geriatrics, primary care, surgery, and others) needs to define basic expectations regarding core palliative skills, core curricula, and procedures. The goal is also to increase awareness in the professional community of the basic principles of palliative care, while acknowledging that complex scenarios and refractory suffering should be managed by specialists in palliative medicine. Some fundamental palliative skills (for example, basic pain-management procedures) are needed in every medical specialty, while others are more specific to a particular medical discipline (for example, symptomatic treatment of severe dyspnea for pulmonologists). Basic educational programs and curricula are relatively adaptable and can be exported. Training programs in palliative care should take place across all medical specialties. This model improves access to specialized palliative care through consultation and strengthens the provision of general palliative care. In addition, this model could simplify the healthcare system and strengthen existing relationships. It could at the same time improve the ability of all clinical staff to address the core needs of palliative care. Opponents of this approach argue that such an approach could threaten current scopes of practice for specialists in palliative medicine. Quill and Abernethy counter that there are far too many seriously ill patients who need specialist palliative care, and specialist fields in palliative care should therefore not be threatened. (Quill, Abernethy, 2013)

Systematic integration of palliative care, for example into standard oncology practice, represents a valuable and essential approach to improving the overall cancer experience of adolescents and young adults. Providing high-quality comprehensive care to adolescents and young adults with cancer is often complex and demanding, but always meaningful. The main goal is to maximize the patient’s chance of cure, while reducing the burden of palliative care tasks. However, palliative care is often not seen as a treatment option. When pain and symptom relief of varying intensity is needed in different disease stages, integrating palliative care at the time of diagnosis allows supportive partnerships with the medical team. Systematic integration of palliative care into standard oncology practice is a valuable and necessary approach to improving the overall cancer experience, and palliative care should be integrated at the beginning of the disease trajectory of patients with cancer. (Wiener, Lori, et al., 2015)

Patients with advanced cancer have reduced quality of life, which tends to worsen as life nears its end. Zimmermann assessed the effect of early palliative care in patients with advanced cancer across several quality-of-life domains. The study was conducted at Princess Margaret Cancer Centre (Toronto, ON, Canada) between 2006 and 2011. At the oncology clinic, computer-generated cancer sequences were stratified by tumor size and location (four lung cancers, eight gastrointestinal cancers, six breast cancers, and two gynecological cancers), and then consultations (at least monthly) were then followed through palliative care and standard oncology care teams. Patients participated only after written informed consent for participation in their own study group without being informed about the existence of another group. Selected patients had advanced cancer according to European Cooperative Oncology Group performance status 0–2 and a clinical prognosis of 6–24 months. Quality of life was assessed with Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT-Sp), quality of life at the end of life (QUAL-E), symptom burden with Edmonton Symptom Assessment System (ESAS), care satisfaction (FAMCARE-P16), and problems related to medical interactions (Assessment Rehabilitation Scale – CARES-MIS medical interaction subscale). These aspects were measured at baseline and once monthly for 4 months. The study results show that after 4 months, significant differences occurred in all outcomes except CARES-MIS. All differences favored the intervention group in which early palliative care was implemented. Although the difference in quality of life was not significant at the primary endpoint, this trial shows promising findings supporting early palliative care for patients with advanced cancer.

(Zimmermann, 2014) Poonja, in relation to early palliative care, notes that patients with cirrhosis who do not receive early palliative care and are not eligible for liver transplantation (LT) are frequently hospitalized multiple times, with unrealistic treatment expectations and poor understanding of death and dying. In his study, the author assessed how often these patients received appropriate palliative care. He conducted a retrospective study including 102 adult patients (67% male, mean age 55 years). Medical records were reviewed to determine their approach to palliative care and symptom relief, as well as the appropriateness of care goals. Sixty-five percent of patients had evidence of pain, 58% had persistent nausea, 10% had depression, 36% had anxiety, 48% suffered from dyspnea, and 49% had anorexia symptoms. Twenty-eight percent of all patients had documentation indicating they should not be resuscitated, but only 11% of them had access to palliative care. Patients with cirrhosis who were removed from the liver transplant waiting list for various reasons rarely requested palliative care (about 10% of cases), even though a high percentage had pain or nausea. The author assumes that improved planning of goals in primary care treatment should ensure that these patients gain access to early palliative care. (Poonja, 2014) This is primarily because palliative care focuses on alleviating suffering and achieving the best possible quality of life for patients and their family caregivers. Comprehensive palliative care services integrate the expertise of providers from multiple disciplines to address the complex needs of seriously ill patients and their families. Team members should include professionals in medicine, nursing, and social work, with additional support from clergy, nutrition, rehabilitation, pharmacy, and other fields as needed.

Kelley and Meierl conducted a study in 2010 examining the quality of life of oncology patients in relation to the onset of depression, anxiety, and mood changes. In addition to standard oncology care, patients in the intervention group met with palliative care at least once a month. The results clearly indicate that, compared with the standard care group, the intervention group that also received palliative care had better quality of life, lower rates of depression, and a 2.7-month higher survival benefit. The results show that palliative care is an appropriate and potentially beneficial intervention: when implemented at diagnosis of serious or life-limiting disease—that is, at the same time as all other appropriate and beneficial medical therapies—it improves quality of life. The specific components of the palliative care intervention remain unspecific and therefore may not be easily reproducible in broader practice settings. For example, the beneficial effect of additional time and attention from healthcare providers and physicians was not assessed. Reasons for the 2.7-month improvement in survival in the group receiving palliative care may include effective treatment of depression, better symptom control, or reduced need for hospitalization. (Kelley, Meierl 2010) Temel examined the effect of introducing palliative care immediately after diagnosis in patients with late-stage lung cancer. Quality of life was evaluated after 12 weeks using the Functional Assessment of Cancer Therapy–Lung (FACT-L) and anxiety and depression scales. The primary outcome was a positive change in quality of life at 12 weeks. Although 27 of 151 patients died within 12 weeks, quality-of-life assessment was completed by 107 patients (86% of the survivors). Patients assigned to palliative care from the time of diagnosis had better quality of life than patients assigned to standard therapy. In addition, fewer patients in the palliative care group had depression symptoms than in standard care (16% vs. 38%, P = 0.01), and median survival was longer in patients receiving palliative care from the start of illness (11.6 months versus 8.9 months, p = 0.02). In patients with lung cancer, introducing palliative care led to marked improvement in quality of life and emotional state. Early palliative care provided longer and higher-quality survival. (Temel, et al. 2010)

Brumley, Enguidanos, and Cherin, in this context, state that their study showed, among patients who received palliative care, increased satisfaction with healthcare services within 60 days of care initiation and a significant reduction in emergency department visits. Among those who agreed to palliative care, average healthcare costs fell by 45% compared with patients receiving usual care. In addition, patients who were enrolled in a palliative care program were more likely to die at home than patients in a comparison group. (Brumley, Enguidanos, Cherin, 2003) In 2013, Parikh conducted a major study on integrating specialty palliative care into standard oncology care and found that this integration leads to marked improvements in quality of life and survival. In patients with advanced cancer who receive palliative care, one sees the phenomenon that they control their symptoms better than those who do not receive consultations. Starting palliative care at diagnosis of advanced cancer also improves patients’ understanding of their own prognosis. Patients with severe disease often feel that their doctors do not provide all available information about the disease and treatment, and these information gaps can lead patients to misunderstanding treatment goals. For example, most patients with carcinoma incorrectly state that their cancer can be cured by chemotherapy or radiotherapy. Physicians within palliative care are enabled to correct this by helping patients develop a more accurate understanding of their prognosis. The author even notes that patients with advanced cancer who receive early consultations in palliative care are less likely to undergo chemotherapy as they approach the end of life. (Parikh, 2013)

Given constrained healthcare resources, it is increasingly important to demonstrate cost and cost-effectiveness evidence for alternative service-delivery models. In this context, palliative care is seen as less costly compared with comparator groups and in most cases the cost difference is statistically significant. Smith, 2014) Therefore, cost savings are not the primary purpose of providing palliative care. However, the rising costs of hospital care, which are the main driver of expenditure growth even among severely ill patients, must be taken into account. Fortunately, improving the quality of palliative care offered can also reduce total per-bed costs. Outpatient palliative care services contribute to reducing total treatment costs for seriously ill patients by up to 33% per patient. Outpatient palliative care achieves these savings by reducing acute care utilization, which leads to fewer hospitalizations. The goal of early palliative care is primarily to provide better quality of life; cost savings from reduced use of some resources are only a secondary effect of this care. Despite these positive outcomes, legislative efforts to support palliative care provision lag behind clinical interest. Although legislation is a key step toward policy change in palliative care, the main barrier remains professional debate about palliative care as a means to improve quality of life. Individuals in need of palliative care respond positively to a definition of palliative care that emphasizes an additional layer of support and is suitable at any phase of serious illness. Stakeholder groups, professionals, and scientists should consistently use this argument and promote this effort to integrate palliative care into every severe and life-threatening disease, not only in the dying phase. In addition, all clinicians caring for seriously ill patients, not only palliative care specialists, must be able to practice primary palliative care. Programs for early palliative care management and advanced care planning, together with routine care, reduce hospital length of stay while lowering end-of-life costs by 22% to 28%. Early provision of palliative care improves quality of life, lowers expenditures, and helps clarify one set of treatment and care goals for patients with advanced cancer or other serious disease. Patients who receive early specialty palliative care have better clinical outcomes at potentially lower cost. (Parikh, 2013) Overall, the number of programs integrating palliative care into primary care is increasing linearly. Significant predictors are associated with a higher likelihood that a palliative care program becomes part of a larger number of hospital beds and ICU beds. In hospitals run by the Catholic Church, and in hospitals that have their own hospice program, there is a much greater likelihood that a palliative care program will be implemented on additional wards. (Morrison, 2005)

Nelson likewise proposes using early palliative care in intensive care units. According to the author, there are two main models of palliative care in intensive care. The first is described as a consultative model, focused on increasing use and effectiveness of palliative care consultants on the ICU for patients and families, especially those identified as at highest risk of death. The second is called the integrative model, in which this model attempts to embed palliative principles and interventions into daily ICU practice for all patients facing critical illness. These models do not exclude each other but represent two ends of an approach spectrum. Choice of an overall approach from these models should be one of the first steps in planning care in intensive care. This process includes careful and realistic assessment of available resources, key stakeholder attitudes, and structural aspects of intensive care. A well-structured ICU can provide meaningful benefits for patients, families, and providers. In ICU care, palliative care focuses on comprehensive pain and symptom relief, communication about care goals, alignment of treatment goals with patient values and preferences, and transitional planning and family support. More and more, this type of care is perceived as an essential part of comprehensive care for patients with critical illness, including those for whom aggressive treatments in intensive care are no longer effective. Nelson identified seven key areas of intensive palliative care: 1) patient and family are at the center of decision-making; 2) existing communication within the care team with patients and families; 3) continuity of care; 4) emotional and practical support for patients and families; 5) symptom and comfort management; 6) spiritual support for patients and families; 7) emotional and organizational support for ICU physicians. On intensive care units, palliative care consultants are often those who request withdrawal of non-beneficial life-prolonging therapies on behalf of the patient, secure do-not-resuscitate status, resolve family conflicts, and carry out transitional planning. (Nelson, 2010)

Integrating palliative care into ICU practice is also important because mortality rates and other adverse outcomes are high in intensive care and virtually all critically ill patients and their families have palliative care needs. Lilly used on the ICU a so-called intensive communication intervention, including proactive family meetings within 72 hours for patients for whom the attending physician predicted ICU length of stay > 5 days and mortality risk > 25%, or likely irreversible functional decline that would prevent discharge home; these meetings involved the treating team, and when possible bedside nurses, family, and patient, and were conducted whenever possible. Comparison of before and after meeting implementation showed a reduction in the one-day median ICU length of stay among patients receiving this form of communication. This model offers emotional, practical, and spiritual support, and interdisciplinary family meetings can stimulate discussion of the patient’s condition, prognosis, and care goals. Such a hybrid approach, however, requires access to palliative care consultants, commitment from the critical care team to strengthening internal capacity to deliver palliative care, and willingness to collaborate. For initiatives based primarily on the consultative model, the palliative care provider must have sufficient staffing to cover increased demand, knowledge and skills to address the specific needs of critically ill patients and families, and commitment to supportive structures, processes, and care plans managed by the critical care team. Success of the integrative model will, according to Nelson, require strong and sustained commitment in intensive care from physicians and nurses. If a social worker, psychologist, or chaplain is assigned to such a unit, that professional can help make integration of palliative care into intensive care easier.

A suitable “balance” between activities of palliative care consultants and clinical physicians must be defined for each specific ICU, and this may change over time depending on many factors, including within one institution. (Nelson, 2010)

Conclusion

We believe that in the future it will be necessary to continue research focused on identifying the components of palliative care that patients receive positively. It is also necessary to identify additional benefits of early palliative care in the context of the new paradigm of palliative care delivery in general. Further research studies are also needed among individuals without oncological disease, where it is likewise necessary to determine how palliative care should be provided to them and how it should be organized. And finally, although studies have shown that palliative care programs reduce hospital costs, additional studies examining the effect of palliative care on total healthcare expenditures still need to be carried out. The presented study results demonstrate the benefit of providing palliative care at the time of diagnosis; however, current societal awareness still links palliative care with the last months of life, while some studies confirm that early palliative care does not necessarily lead to death and, in some cases, may extend life. We think that first of all, in Slovakia, early palliative care must be defined and this model should be presented to the wider public through educational programs. A new approach to early palliative care reflects that a life-threatening disease that can potentially be cured or controlled carries a substantial burden of suffering for patients and their loved ones, and this suffering can be effectively addressed through modern palliative care teams. Integrated early palliative care requires patients to have access to palliative care in inpatient and outpatient settings through both phases of disease—acute and chronic. In the article, we also point out that more patients die in intensive care units than anywhere else in hospitals. Integration of palliative care into intensive care may offer a meaningful benefit for patients, families, and certainly providers as well. In line with global research findings, we propose adopting the model of early palliative care and the palliative care model currently practiced in ICUs into Slovak practice.

Author: Mgr. Katarína Kotradyová, PhD. List of bibliographic references

BRUMLEY, Richard D., ENGUIDANOS, Susan., CHERIN, David A. 2003. Effectiveness of a home-based palliative care program for end-of-life. In Journal of palliative medicine. ISSN 1096-6218 , 2003, 6.5, (715-724). Fabuš S. Is there a difference between palliative and hospice care? [online]. [cit. 2016-04-13]. Dostupné na internete: . KELLEY, Amy S., MEIER, Diane E. 2010. Palliative care—a shifting paradigm. In New England Journal of Medicine. ISSN 0028-4793 , 2010, 363.8, (781-782). MORRISON, R. Sean., et al. 2005. The growth of palliative care programs in United States hospitals. In Journal of palliative medicine. ISSN 1096-6218 , 2005, 8.6, (1127-1134). NELSON, Judith E., et al. 2010. Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: A report from the IPAL-ICU Project (Improving Palliative Care in the ICU). In Critical care medicine. ISSN 0090-3493 , 2010, 38.9, (1765). PARIKH, Ravi B., et al. 2013. Early specialty palliative care—translating data in oncology into practice. In New England Journal of Medicine. ISSN 0028-4793, 2013, 369.24, (2347-2351). POONJA, Zafrina, et al. 2014. Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management. In Clinical Gastroenterology and Hepatology. ISSN 1542-3565, 2014, 12.4, (692-698). QUILL, Timothy E., ABERNETHY., Amy P. 2013. Generalist plus specialist palliative care creating a more sustainable model. In New England Journal of Medicine. ISSN 0028-4793, 2013, 368.13, (1173-1175). SMITH, Samantha, et al. 2014. Evidence on the cost and cost-effectiveness of palliative care: A literature review. In Palliative medicine. ISSN 1477-030X , 2014, 28.2, (130-150). TEMEL, Jennifer S., et al. 2010. Early palliative care for patients with metastatic non–small-cell lung cancer. In New England Journal of Medicine, ISSN 0028-4793, 2010, 363.8, (733-742). WIENER, Lori, et al.2015. Threading the Cloak: Palliative Care Education for Care Providers of Adolescents and Young Adults with Cancer. In Clinical oncology in adolescents and young adults. ISSN 2230-2263, 2015, 5, (1). ZIMMERMANN, Camilla, et al. 2014. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. In The Lancet. ISSN 0140-6736, 2014, 383.9930, (1721-1730).

1This information was made public by Parikh in his 2013 research.