Fig. 5.1
The multidisciplinary team to provide support to the patient and family (Created by Briana Ketterer, MD)
With the many members of a palliative care team, there are a variety of different structures for the team. Bruera and Hui concisely outlined many of the common modes of palliative care delivery in their 2012 article [9]. For example, services can be delivered via a mobile consultation service in a hospital setting. The team in this setting often involves a physician, an advance practice provider, and physicians in training (medical students, residents, and fellows). Another mode is the acute palliative care unit where an interdisciplinary team cares for the acutely ill and actively dying and those whose family members need respite. Outpatient palliative care services for ongoing symptom management and goals of care discussions are becoming utilized more frequently. In this arena there are various different models of care delivery utilized. Most specifically we will address how supportive care and palliative care can be integrated into a comprehensive cancer care model.
Bruera and Hui described three practice models: the Solo Practice Model, the Congress Practice Model, and the Integrated Care Model [9]. In the Solo Practice Model, the oncologist provides both cancer care and supportive care. Time constraints of a busy practice, complex patients, and lack of formal training in palliative care often mean that not all components are adequately addressed, rendering this model less than ideal. In the Congress Practice Model, the oncologist refers to various services with special expertise. This can result in disjointed care at a great cost in time and money as well as patient access problems. Again, this model is less than ideal. The Integrated Care Model approaches an ideal system. The oncology team works frequently with the palliative care team for symptom management and develops a more coordinated approach to patient-centered care [9].
5.6 Referral to Specialty Palliative Care
Palliative care should be viewed as an adjunct to, not an alternative to, the management of life-threatening illness. By working together as an integrated unit throughout the disease trajectory, this could minimize patients’ feelings of abandonment later in the disease course [10]. Early palliative care involvement in cancer-related care is advocated by the National Comprehensive Cancer Network (NCCN) and reflected in national guidelines. Palliative assessment at the time of the life-altering diagnosis and utilization of palliative care services early in the disease course have been shown to improve quality of life measures, patient and family satisfaction, symptom management, and psychosocial support and ease the transition to end-of-life care [1]. Early palliative care, in addition to oncologic standard of care, improved quality of life measures and mood and prolonged survival in patients with non-small cell lung cancer despite less aggressive end-of-life care [11]. At a time when healthcare cost discussions abound, palliative care services lessen costs on the healthcare system especially during the last months of life without compromising quality of care and mortality [12].
According to the Institute of Medicine, regular screening by oncologists and other providers for the following should prompt palliative consultation: uncontrolled symptoms, moderate to severe distress regarding diagnosis or cancer-related treatment, comorbid conditions, life expectancy of less than 6 months, metastatic solid cancer, concerns about disease and/or decision-making process, assessment of caregiver burden, or requests for palliative involvement [13].
The NCCN outlines the following criteria for consultation in the NCCN Clinical Practice Guidelines in Oncology: Palliative Care [14].
Adapted from NCCN:
Palliative care 2013 criteria for consultation with palliative care specialist:
1.
Patient characteristics:
(a)
Limited treatment options
(b)
High risk of poor pain control that remains resistant to conventional interventions
(i)
Neuropathic pain
(ii)
Incident of breakthrough pain
(iii)
Associated psychosocial and family distress
(iv)
Rapid escalation of opioid dose
(v)
History of drug or alcohol abuse
(vi)
Impaired cognitive function
(c)
Non-pain symptoms that are suboptimally controlled by conventional management, high symptom burden
(d)
Frequent ED visits or hospital readmissions
(e)
Complication ICU admissions (esp. lengthy ventilator support)
(f)
Multiple “allergies” or history of multiple adverse reactions to pain and symptom management interventions
(g)
High distress core (>4)
(h)
Cognitive impairment
(i)
Severe comorbid conditions
(j)
Communication barriers
(k)
Request for hastened death
(l)
Inability to engage in advance care planning and care plan
2.
Social circumstances or anticipatory bereavement issues:
(a)
Family/caregiver limitations
(b)
Inadequate social support
(c)
Intensely dependent relationship(s)
(d)
Financial limitations
(e)
Limited access to care
(f)
Family discord
(g)
Patient’s concerns regarding care of dependents
(h)
Spiritual or existential crisis
(i)
Unresolved or multiple prior losses
3.
Staff:
(a)
Compassion fatigue
(b)
Moral distress
Another approach for healthcare providers to aid decision making regarding palliative care consultation is to consider the “surprise” question: Would I be surprised if this patient died in the next year? [15] Asking the “surprise” question does not require that we set an exact time frame, but instead draws attention to the fact that there are additional resources including palliative care services that may benefit the patient and family if we would not be surprised if the patient died in the next year. Similarly, if the provider would not be surprised if the patient died in the next 6 months, hospice services may be an option. Palliative care services should be considered early and often. Primary care providers, oncologists, and other frontline providers should have adequate training to provide primary palliative care and be able to recognize when specialized services are necessary. In addition, healthcare providers should advocate for expansion of palliative care services if such resources are absent or inadequate at their facility.
5.7 Standard of Care
Our current healthcare structure is often inadequate in meeting the needs of seriously ill patients. As discussed in the previous section, emerging evidence has shown that the introduction of palliative care improves quality of life, decreases symptom burden, improves mood, and decreases use of healthcare services [16]. As a result, the Institute of Medicine’s 2013 report cites the lack of palliative care as a major problem in delivery of oncologic healthcare. An expert panel of the American Society of Clinical Oncology (ASCO) [17] and the NCCN guidelines state that institutions should develop processes for integrating palliative care into cancer care, both as part of usual oncology care and for patients with specialty palliative care throughout the different phases of care including diagnosis, treatment, survivorship, end-of-life care, and bereavement [18]. At least 85 % of hospitals with more than 300 beds and 98 % of cancer institutes have implemented palliative care programs according to the Center to Advance Palliative Care.
5.8 Quality of Life
Quality of life is influenced by physical, social, psychological, and spiritual dimensions [19, 20]. The concept of total pain described by Ferris and colleagues expanded to include eight domains of suffering in patients and family (Fig. 5.2) [21]. These eight domains included disease management, physical, psychological, social, spiritual, practical, end of life, and grief [21]. All eight of these domains should be addressed to manage suffering and improve quality of life [21].
Quality of life is subjective, unique, and multidimensional. It can be difficult to measure, yet attention to quality of life is extremely important. Quality of life assessment can be helpful in weighing the risks and benefits of treatment options, particularly when differences in survival among the options are potentially small or unknown [22]. There have been many measures created to help quantify quality of life including the Missoula–VITAS Quality of Life Index (MVQOLI), the Palliative Care Quality of Life Instrument (PQLI), Life Evaluation Questionnaire (LEQ), the Brief Hospice Inventory, and the quality of life at the end of life (QUAL-E) [23].
In healthcare, the focus is on health-related quality of life (HRQOL) which is based on symptom burden and functioning and to a lesser extent on meaning and fulfillment. Patients with advanced cancer do frequently experience pain, fatigue, weight loss, anorexia, nausea, anxiety, shortness of breath, and confusion [24]. Yet as one approaches end of life, spirituality issues become more prominent, as well as family members’ perception of quality of care. Thus it is very important to manage the family as the unit of care.
There is a rapidly expanding body of evidence that palliative and supportive care improves symptoms and quality of life for patients with cancer. Temel et al. reported that patients receiving palliative care had better quality of life and less depressive symptoms (16 % vs. 38 %, P = 0.01) [11]. An advanced practice nursing palliative effort concurrent with usual care was successful at improving quality of life and mood, though not symptom intensity or use of acute care [25]. Through an outpatient supportive care clinic for patients with advanced cancer, pain was decreased by 52 % and fatigue by 44 % [26]. An inpatient trial in Italy studying specialty palliative care teams found that risk of suffering from severe pain was reduced to 31 % by the use of palliative specialists [27]. A cluster randomized trial of Canadian cancer patients receiving early specialized palliative care in an outpatient clinic setting demonstrated non-significant improvements in quality of life at the primary end point and significant improvements at later end points [28].
5.9 Patient and Family Satisfaction
The SUPPORT trial was one of the first trials to demonstrate the lack of patient and family satisfaction in end-of-life care. Patient–physician communication was lacking and 50 % of patients suffered from moderate to severe pain which was not well controlled [29]. Patients with serious illness often develop depression, anxiety, and other mental health problems, but this is not limited to just the patient [30]. Caring for a loved one with a serious illness is stressful and is often also associated with depression, anxiety, and other health problems with their family caregivers [31]. This can have animpact to their perception of good quality of care and can lead to mistrust of their physician if these symptoms are not well managed [30, 32]. Steinhauser et al. surveyed terminally ill patients, recently bereaved family members, physicians, and other care providers to determine those factors deemed most important at the end of life. This highlights the deficits of the traditional medical approach to patient and family, which can leave out important considerations of care affecting patient and family satisfaction.
Palliative care focuses on enhancing communication and discussing goals of care early in the disease trajectory and thus elicits treatment plans that are in accordance with patient’s goals early in the disease course. This intensive communication results in a higher level of patient and family satisfaction and smooth coordination of care between settings. Among family members of patients who died at one tertiary care hospital (which included 21 % [32/149] of patients with malignancy), Gelfman and his colleagues showed 65 % of palliative care patients’ family members reported that their emotional or spiritual needs were met, as compared to 35 % of usual care patients’ family members (P = 0.004) [33].
5.10 Cost Savings
Cost savings from palliative and supportive care comes largely from better matching goals of care and prognosis with desired intensity of care. Twenty percent of cancer patients receive chemotherapy within the last 2 weeks of life [34]. In the SUPPORT trial, end-of-life care caused bankruptcy in one-third of families, and the financial burden of that care did not equate to better quality of care nor better patient or family satisfaction [29]. According to a study in Critical Care Medicine, adding palliative care shortened ICU length of stay. ICU length of stay was 5.72 days for group receiving palliative care vs. 14.12 days in the usual care group, a statistically significant difference of 8.40 days (P = 0.004) in this study of high-risk critical care patients which included 33 patients with stage IV malignancy [35]. Among women with platinum-resistant ovarian cancer, a palliative care intervention resulted in cost savings of $1285 per patient [36]. Less intensive or lengthy hospital stays result in cost savings overall.
5.10.1 Quality of Care
In response to the Institute of Medicine report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,” the American Society of Clinical Oncology (ASCO) Quality Oncology Practice Initiative (QOPI) selected several key metrics for determining high-quality end-of-life care. These included: no chemotherapy in the last 14 days of life, enrollment in hospice services, and hospice length of stay of greater than 7 days [16, 34, 37]. These metrics track appropriate transition to hospice services which provide superior patient and family satisfaction, control of physical symptoms and mental health concerns, and less complicated bereavement [38]. The spring 2014 QOPI measures included (among others) metrics for:
Location of death
Whether death occurred with or without a hospice or palliative intervention
Discussion of hospice or palliative care in the last 2 months of life
Assessment and treatment of pain and/or dyspnea documented
Antiemetic therapy prescribed appropriately
Assessment of patient’s well-being
Documentation of advance directives
Advance care planning is another key component of quality care [39]. Guidelines recommend that patients with a prognosis of less than 1 year have a discussion on end-of-life preferences [40]. Additional quality guidelines with respect to goals and communication are available [39].
In a secondary analysis of the Temel study, Greer et al. found integration of palliative care into usual oncologic management reduced the administration of chemotherapy within 60 days of death by 0.47 (95 % CI: 0.23–0.99) [11, 38]. There was no difference in the number of rounds of chemotherapy, leading authors to conclude there was better timing of chemotherapy in the palliative care group [38]. Patients receiving a palliative intervention were twice as likely to be referred to hospice care for greater than 7 days prior to death and had a longer median interval between last dose of chemotherapy and death (64 days vs. 41 days) [38].
5.10.2 Life Expectancy and Prognostication
Approximately 80 % of patients want to know prognosis [41, 42]. A great majority (>95 %) with metastatic cancer would like to know treatment options and side effects [42]. Among 126 patients with incurable cancer, 98 % reported they would like their oncologist to “be realistic about my likely future” [43]. The first of six key elements on individualized care for patients with advanced cancer includes the recommendation that “Patients should be well informed about their prognosis and treatment options…” [44]. They should be informed about the possibility of cure, the response rates of treatments, and effect of treatment on both survival and quality of life [18]. Good communication about prognosis is critical, because the degree of understanding is strongly linked to the treatment choices the patient makes [38, 44]. Murphy showed that if the overall life expectancy was less than 1 year, only 5 % of patients would want CPR after knowing accurate information about outcomes [45]. Despite guidelines recommending advance care planning, discussion of prognosis, and honest communication about options, 4074 physicians surveyed on a hypothetical patient with 4–6 months life expectancy showed that only 65 % would discuss prognosis, 44 % would discuss code status, and 26 % would discuss hospice [46]. Many healthcare providers hesitate, or are unable, to provide accurate prognostic information [47]. Common misconceptions include the belief that it will make people depressed or hopeless, that introduction of hospice or palliative care may reduce length of survival, and that prognostication is inaccurate or inappropriate [40]. Multiple studies have shown that physicians overestimate prognosis and are often grossly optimistic when discussing with patients. Christakis illustrated that physicians overestimate by a factor of 5 [48]. When it comes to prognosis, there are three common strategies that have been described among oncologists: realism, avoidance, and optimism, with each having their own unintended consequences [48, 49]. It has been shown in studies that physician’s prognostication is skewed by conscious and unconscious optimism, which will impact a patient’s decision regarding treatment options. In truth, this can be helpful in maintaining a patient’s hope, and patients indeed prefer hopeful physicians. But this can also lead to more aggressive and futile life-sustaining therapies which take away time for the patient to spend with love ones, time for financial planning, and, in general, time to work toward closure [49]. It will also delay hospice referral, which can greatly impact their quality of life toward end of life. It was not that long ago, about 40 years ago, that a physician would not tell patients their prognosis; however this way of practice compromised patient’s autonomy. Thus this practice is out of favor, but surprisingly when physicians were studied, still many preferred nondisclosure to frank disclosure. This could possibly be due to their own inability to formulate reliable prognoses [48]. Also when a physician has realistic prognostic discussions with a patient, they can come off as uncaring and unempathetic. Furthermore, about 20 % of patients do not want to know their prognosis [41, 42].
The two key factors when predicting prognostication is performance status and clinical symptoms. Multiple performance status metrics have been developed to quantify performance status. The three most commonly used are Karnofsky performance status (KPS), Eastern Cooperative Oncology Group (ECOG) system, and Palliative Performance Scale (PPS). In the palliative care setting, it has been proposed that a better way to predict prognosis is to ask “Would I be surprised if my patient died in the next year?” This has been promulgated by palliative care physician, Dr. Joanne Lynn, as a simple way of screening for need for palliative care [50]. This method was validated among 231 Italian general practitioners whose patients had advanced (stage IV) cancer [51]. The question demonstrated significant correlation with 1-year survival and had a sensitivity of 69 %, specificity of 84 %, positive predictive value of 84 %, and negative predictive value of 69 % [51]. Vigano showed that after performance status, certain clinical signs and symptoms were associated with patient’s survival [52]. These include dyspnea, dysphagia, weight loss, xerostomia, anorexia, and cognitive impairment [52]. An integrated model of these two key factors is the Palliative Prognostic Index (PPI) [53]. This study, which predicted a 6-week survival chance with a sensitivity of 62 % and specificity of 86 %, showed that PPI can be used to predict prognosis for patients with advanced cancer [54].
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