Improving the quality of life of terminally ill oncological patients: the example of palliative care at Hospice Villa Speranza

Pain relief and palliative care are fundamental in approaching patients with advanced oncological illness. Despite significant progress of clinical patient care, the knowledge of how to treat people during the end of life is still limited, especially owing to the multifaceted nature of end-of-life care and the natural tendency to avoid the subject of death.

In this context a crucial role is played by hospices. The principal goal of a hospice is not to cure but to care. The main focus is to improve the quality of life of terminally ill patients by directly treating pain and addressing physical, psychosocial and spiritual problems of patients and families [1].

The philosophy of hospice care is based on the respect of patient’s autonomy, and the holistic vision of patient and family as a single unit of care [2]. The role of physicians in addressing oncological patients who need end-of-life treatment in hospices is crucial to preserve quality of life of both patients and their families. In order to fully meet patients’ and families’ needs, hospice care can be provided in any setting, including acute and chronic care facilities, patients’ homes, nursing homes and hospitals [3].

One example of a caring structure that gives this type of services both as hospice care and home care is represented by Hospice Villa Speranza (HVS). This article describes the services provided by this structure, and discusses the importance of different aspects of hospice care in preserving the quality of life of patients and families.

Main features of HVS: the only academic hospice in Italy

HVS is a National Health System-accredited health facility of the Università Cattolica del Sacro Cuore (Rome, Italy), which has been providing palliative care for patients since 2000, both as hospice and home care.

The assistance supplied by HVS is in line with national and international guidelines on palliative care and it is enriched by a constant interaction with the Hospital Policlinico A Gemelli (Rome, Italy), a leading center for healthcare in Italy. Unlike other hospices present in Italy, HVS is an academic hospice, whose services are strictly interconnected with the activities of University Hospital A Gemelli and other healthcare structures. An example of the results achieved thanks to the connection between HSV and the Hospital Policlinico A Gemelli is the creation of the ‘Palliative Simultaneous Care’ model, which is dedicated to patients who require palliative care and focuses on starting the treatment as early as possible when needed.

A recent randomized controlled trial demonstrated that the integration between ambulatory palliative care and oncologic care improves mood, quality of life, patient satisfaction and caregiver burdens [4]. Palliative care should not, therefore, be introduced only after oncology therapy, but the two approaches should be concurrent, one focusing on cancer treatment, the other on psychosocial elements [4]. Moreover, according to the provisional clinical opinion of the American Society of Clinical Oncology, the integration of oncology and palliative care should be considered early to improve outcomes and reduce overall costs [5]. Physicians should, therefore, balance both approaches, for example by prescribing pain control medications together with anticancer therapy.

Patients

The structure of HVS comprises of 30 beds for patients in the hospice care program; in total, during 2010, 621 patients were admitted as in-patients and 335 were provided care at home Patients admitted in 2010 mainly suffered from gastrointestinal (34.7%), genitourinary (17.8%), hematologic (8.2%) and lung (8.0%) cancers.

Between 2004 and 2010 the number of patients in HVS who received care for more than 90 days has nearly tripled, and this result is probably attributable to the palliative Simultaneous Care Model. In comparison, the median length of an in-patient stay for other hospices is approximately 20 days [6].

Quality of life

Quality of life is perceived differently by each person and it is, therefore, fundamental to treat each patient individually at both a physical and psychological level to improve their quality of life [7].

At HSV, quality of life is measured through the Edmonton Symptoms Assessment System, a worldwide-accepted screening tool [Matzeu M et al. Terminal symptoms clusters in residential palliative care patients using Edmonton Symptoms Assessment System (ESAS): a preliminary experience (2013), Manuscript in preparation]. An analysis performed at HVS in 2011 evaluated the symptoms most frequently measured through the Edmonton Symptoms Assessment on more than 100 patients, and studied the existence of possible correlations among them. As expected, a progressive worsening of all symptoms was observed for each patient; moreover, a small, but significant, correlation emerged between fatigue and sleepiness, while a strong association was reported between malaise and lack of appetite. The evaluation of these correlations, broadly defined as terminal symptom clusters, may help detect the progression of the illness and can be used as effective prognostic tool. Furthermore, these data underline the importance of a multidisciplinary approach in evaluating patient symptoms [Matzeu M et al. Terminal symptoms clusters in residential palliative care patients using Edmonton Symptoms Assessment System (ESAS): a preliminary experience (2013), Manuscript in preparation].

Hospice care should also protect and enhance a patient’s decision-making autonomy and their right to self-rule. Although potentially challenging for physicians, a patient’s decision should always be respected, provided that it is accompanied by full and exhaustive information on the risks, benefits and alternatives of each intervention [8].

Family support

Another key aspect of the support rendered by hospices is the focus on families or caregivers, who are indirect victims of the illness and may experience severe distress and anxiety symptoms. HVS provides scheduled psychotherapy counseling meetings for the patient, the whole family group or even single members of the family, in order to facilitate their adaptation to the demanding situation.

The counseling meeting is performed jointly by a physician and a psychologist before the initiation of palliative care in order to draw a psychosocial profile of the family, to assess the level of knowledge and awareness of the disease, to clarify patients’ desires and the expectations of family members, and to clearly describe the assistance provided by the hospice. Subsequent interviews evaluate the emotional, organizational and welfare status of the family, help them to face specific problems and assist in the decision-making process.

Lautrette et al. demonstrated that communication with the family improves family outcomes of anxiety, depression and post-traumatic stress disorder in the bereavement period [9]. On the whole, communication among patients, family and physicians is a fundamental aspect of end-of-life care, which is considered equally or even more important than clinical skill.

Hospice care: the importance of environment

Hospice care provided by HVS is focused on the idea of ‘home replacement’ in which a healthcare structure and a home-like environment are combined to provide the maximum possible comfort to patients. There is no restriction to visiting hours, number or age of visitors, and the patient is encouraged to personalize his/her room by bringing in personal items; the privacy of the room and the availability of space for family gathering is ensured. If home care is possible, the patient is allowed to leave the hospice; in these cases the hospice team instructs the family on how to better handle the caregiving tasks.

Home care

Palliative care can be also provided directly at home for terminally ill patients who can rely on the support of their family, as suggested by surveys indicating that the majority of individuals would prefer to receive end-of-life care at home [10]. However, home care implies practical and emotional difficulties both for patients and their families.

In this context, HVS employs a multidisciplinary team formed of doctors, psychologists, physiotherapists, nurses, spiritual assistants and volunteers. Among the various tasks performed by the multidisciplinary team at HVS during home care, pain treatment is certainly the most important; however, other types of interventions were treatment of dyspnea, anuria and globe bladder; support in case of agitation and confusion; and management of catheterization and of heart failure. When necessary, alternatives to home care, including consideration of a short stay in the hospice and psychological support, are suggested.

Despite its complexity and the distress that it may cause to caregivers, home care is associated with positive outcomes, a reduction of general healthcare use, a decrease in costs, and increased family and patient satisfaction [3].

Occupational therapy

Hospice Villa Speranza provides patients with a service of individualized occupational therapy, according to the physical and mental status of the patient. A psychological visit is performed to evaluate the mental condition of the patients and to identify possible mental disturbances, such as depression. Cognitive functions are assessed through the Mini Mental State Examination; moreover, a physical evaluation determines the remaining abilities of the patients, which can impact on the type of activities they can perform. Patients’ preferences are taken into consideration and, when possible, previous hobbies are maintained. Some of the activities recommended by the hospice include reading, listening to music, playing cards and knitting; alternatively, new interests can be identified and group activities are recommended.

In this way occupational therapy helps prevent isolation, a common experience at the end of life, and contributes to the sustainment of a patient’s self-worth.

Expressing feelings & emotions

One of the main objectives of hospice care is the creation of a patient–provider relations, which is achieved by focusing on the patient’s expression of feelings and emotions. HVS encourages the presence of family, caregivers or nurses who can support the patient simply by their constant presence. Since 2007 the Hospice has installed a blackboard called an ‘emotion window’ in each room, which serves as a free space where patients and families can safely express their needs, personality and creativity.

Spiritual & religious support

It has been reported that patients desire medical caregivers to take an active role in providing spiritual care [11]. HVS offers the support of a spiritual assistant to all the patients, in full respect of their religious choices. The spiritual assistant welcomes the patient and the family, takes part in briefings and cooperates with the home care team. The service is fully in line with a common opinion among clinicians who feel that spiritual care at the end of life should be viewed as a fluid and flexible interpersonal process between healthcare providers, patients and families, rather than a set of prescribed rules.

A fundamental element for providing efficient spiritual care is the evaluation of the spiritual history of patients. At HVS the instrument used to evaluate spiritual history is FICA, a tool designed in 1996 and recommended by the WHO [12]. The Religious and Spiritual in Cancer Care Study showed that the majority of patients (77.9%), physicians (71.6%) and nurses (85.1%) believed that routine spiritual care would have a positive impact on patients; however, only 25% of patients had actually previously received spiritual care [13].

Psychosocial intervention & communication

In hospice care, the psychosocial program should consist of: information and education of the patient and family; equipment and transport assistance; and pharmacological, physical or occupational therapy [14].

Data collected during 2010 at HVS demonstrates that counseling meetings have been requested especially in the home care setting, probably because this type of support provides families with useful information on the services offered by the hospice. However, individual psychological consults have been frequently requested by patients in hospice care.

Pain treatment

Terminally ill patients usually need palliative and symptomatic treatments. The primary focus is always on the management of pain, although several other symptoms, such as breathing disorders, restlessness, anxiety, eating disorders, nausea and constipation, should be taken into consideration.

The measurement of pain can be performed via multiple tools such as pain scales, where pain intensity or other features can be evaluated based on self-report, observational (behavioral) or physiological data. At HVS the most used scale is the Numeric Rate Scale.

The treatment of pain provided by HVS is based on WHO’s analgesic ladder. Mild pain should be addressed with NSAIDs; the use of weak opioids is suggested in cases of mild-to-moderate pain and strong opioids should be employed only in cases of serious pain relief. However, according to the EAPC guideline published in 2012, step III opioids at lower doses can also be used to treat moderate pain at the second step of the ladder, in order to provide adequate relief to patients [15]. However, hospice patients usually present with moderate or severe chronic pain and, therefore, the administration of step III opioids, such as morphine, oxycodone and hydromorphone, is usually required (Table 1).

According to the EAPC guideline, any one of these three drugs can be used as the first choice step III opioids, as tolerability profiles are similar and no study has demonstrated a clear superiority of any treatment [15]. However, intravenous morphine remains the international gold standard for first-line treatment of pain mainly owing to its cost, familiarity and availability. During 2010 and 2011 at HVS, intravenous morphine has been the most used painkiller, both in hospice and home care. Although intravenous administration requires close supervision and a complex management, it actually presents considerable advantages in terms of rapidity and predictability of the therapeutic effect, and it is frequently used as a rescue medication to manage breakthrough pain [16]. However, intravenous administration is associated with a short duration effect compared with oral formulations, and the depletion of superficial veins in cancer patients can make administration difficult.

Several patients may, therefore, require a different route of administration, such as oral or transdermal. Oral analgesia is considered the first choice owing to better handling and ease of dose adjustment, together with reduced costs, and familiarity and comfort of patients. Oral painkillers are available both as immediate release formulations and as controlled release preparations, which produce slow and uniform absorption of the active principle, prolonging the analgesic effect for several hours.

MS Contin^® (Purdue Pharma) is an example of a prolonged-release oral formulation containing morphine sulphate that has been used at HVS between 2010 and 2011, mostly during home care (more than 20 times more frequently compared with hospice care), even if the prevalence of this treatment is rather low when compared with other oral drugs. Another possible oral treatment is hydromorphone, available in different pharmaceutical forms, including prolonged release tablets. Although modified release formulations grant a prolonged relief from pain with a single administration, the use of hydromorphone at HVS has been quite low in the previous few years. The main reason is that modified released formulations are rather difficult to modulate and are inappropriate for patients with rapidly changing conditions. Moreover when an immediate release formulation is substituted with a sustained release one, it is difficult to measure the correct dose, and dosage adjustment may be necessary to reoptimize pain control [17]. The main oral treatment used at HVS is oxycodone; its use was introduced in 2010 and since then it has become the second most commonly used drug for pain treatment at the hospice. According to EAPC guidelines, oxycodone is comparable with morphine and hydromorphone both in terms of efficacy and safety profile; however, it has an increased systemic availability (∼60–90%) when compared with oral morphine, and the equianalgesic dose of oral oxycodone is between half and two-thirds that of oral morphine [18]. Moreover, oxycodone seems to be more effective in treating visceral pain and it has a higher analgesic effect than morphine in treating mechanically and thermally evoked pain in viscera, skin, muscles and the esophagus [19].

For patients who require routes of administration other than intravenously, but have ingestion problems or do not tolerate oral opioids, an important alternative is represented by transdermal formulations. At HVS, fentanyl is the main transdermal opioid used for pain treatment, although data from drug consumption between 2010 and 2011 suggest that it is less frequently prescribed with respect to intravenous and oral analgesics. Studies in which transdermal fentanyl was compared with oral morphine for the treatment of pain showed no difference in terms of efficacy and side effects between the two drugs [15]. However, transdermal formulations present peculiar pharmaco-kinetic and -dynamic characteristics that are sometimes viewed as an obstacle to their use. For example, their slow reaction to dose changes make them predominantly suitable for patients with chronic stable pain, however, they should not be the first choice in opioid-naive patients who may suffer from overmedication, sedation and respiratory depression [20].

Fentanyl is also available in rapid-onset oral preparations, such as sublingual tablets and oral transmucosal formulations, which have been proven effective in treating episodes of breakthrough pain. Although morphine treatment is usually the preferred choice in cases of transitory and intensive episodes of pain, a meta-analysis of five studies on fentanyl rapid-onset formulations showed that fentanyl preparations provide superior pain relief than oral morphine in the first 30 min after dosing [21]. In particular, for oral transmucosal fentanyl citrate the onset of action starts within 30 min and the short time to maximum concentration makes it a useful treatment for breakthrough pain management [18].

The selection of pain treatment is usually based on the specific characteristics of each patient and on the availability of the drug at the hospice, its cost and other pharmacoeconomical considerations.

Conclusion & future perspective

The results of a survey conducted in 2010 on the quality of services provided by the HVS revealed a general satisfaction among patients and families. Both in home and hospice care the highest levels of satisfaction were related to nursing assistance (71.7 and 60.4% were highly satisfied for home and hospice care, respectively), medical assistance (71.7 and 58.4%), relationship with the staff (69 and 57.8%) and expertise (67.3 and 57.1%), with higher levels for home care. Slightly lower levels of satisfaction were measured for information provided (57.5 and 52.6% were highly satisfied for home and hospice care, respectively) and psychosocial support (63.7 and 51.3%). These data demonstrate the importance of the role played by the multidisciplinary team in watching, listening and staying with patients and their families.

Future goals of the hospice include improvement of the interaction with hospitals in order to assure timely and integrated care for terminally ill patients and to further develop the Simultaneous Palliative Care model, and increase the psychological support team and stabilize the permanence of health staff inside the hospice in order to better develop their competence, expertise and communication skills over time, which has been shown to be effective in providing a worthy support to patients.