Hospice Care In Health Care Health Care and Hospice Care
Hospice care provides comfort and support to patients and their families during the final stages of terminal illness. It focuses on the quality of life rather than curing the illness, providing palliative care that includes managing symptoms, relieving pain, and addressing the emotional, spiritual, and social needs of the patient and their family. Unlike traditional health care, which seeks to cure or treat illnesses, hospice care is about allowing terminally ill patients to live their remaining days with dignity, comfort, and peace.
Hospice and Terminally Ill Patients
Hospice care, particularly in the United States, has been the subject of extensive research, often focused on the differences between hospice care and the care provided in traditional medical settings for the terminally ill. This early research mainly aimed at understanding whether hospice care, which includes significant nursing involvement, was superior in improving the quality of life for dying patients. While these studies explored the effects of hospice care, much of it did not fall strictly under the category of nursing research but instead covered various disciplines such as medicine, psychology, and social work.
In Canada, one of the earliest studies related to hospice care was led by Mary Vachon, a US-trained nurse. She was invited by the palliative care team at the Royal Victoria Hospital in Montreal to study the stress levels experienced by the caregivers who were part of the palliative care team. This research expanded into examining pain pathways, various medications for pain management, and even the impact of music therapy on patients.
In England, Dame Cicely Saunders, who had a background in medicine, social work, and nursing, spearheaded research into the effect of medications aimed at alleviating symptoms for terminally ill patients. These early studies, whether in Canada, the United States, or England, all shared a common goal: improving the quality of care for the dying. In the U.S., these studies also sought to evaluate whether hospice care was financially sustainable, which ultimately influenced decisions regarding the funding of hospice as a health care benefit.
Research on hospice has been carried out across a range of disciplines and employed various methodological approaches, including both qualitative methods such as ethnography, observations, and semi-structured interviews, and quantitative approaches like quasi-experimental designs, surveys, and audits. This interdisciplinary research aims to enhance our understanding of hospice care from multiple perspectives.
Hospice Palliative Care
One of the most significant studies related to hospice palliative care was conducted by Kellar, Martinez, Finis, Bolgar, and von Gunten in 1996. They surveyed the families of 240 patients who had participated in a hospice program to understand their satisfaction levels and examine the demographics of the patients. The most frequent response to the question of what was the greatest advantage of the program was the professional nursing care provided to the patients. Nursing care, in this context, was recognized as a cornerstone of hospice care, with families placing immense trust in the nurses’ abilities to manage symptoms and offer emotional support.
The study revealed very few complaints about the hospice care itself. When disadvantages were mentioned, they were usually related to logistical issues, such as the cost of parking at the facility or the distance families had to travel to visit their loved ones. Some families expressed concerns about the possibility of patients being transferred to different facilities due to the hospice’s designation as an acute-care facility.
Out of the 92 completed surveys, a striking 88% of families found the hospice care to be extremely helpful, while only 9% rated it as helpful, and just 1% were neutral. These findings underscored the positive impact of hospice care, particularly in terms of patient comfort and family satisfaction. It also highlighted the critical role of nurses, who are often the primary caregivers in these settings. This type of study represents a broader category of research aimed at assessing the effectiveness of hospice care from the perspective of those who experience it firsthand.
Hospice Referral
The success and sustainability of hospice care programs heavily depend on the process of hospice referral. While much attention has traditionally been paid to the attitudes of physicians toward hospice referrals, a study conducted by Schim, Jackson, Seely, Gruinow, and Baker in 2000 shifted the focus to home care nurses. The researchers surveyed 160 home care nurses to assess their attitudes toward hospice referral. A response rate of nearly 47% revealed interesting insights: home care nurses did not see much difference between the services offered by home care and hospice programs. Notably, a significant portion of respondents (42.6%) believed that a hospice insurance benefit was necessary for a referral, highlighting a gap in understanding about hospice services.
This research underscores the importance of ensuring that home care nurses are well-informed about the requirements and components of hospice care, as their attitudes and knowledge directly impact the referral process. A separate study conducted by Cramer, McCorkle, Cherlin, Johnson Hurzeler, and Bradley in 2003 examined factors that increased the likelihood of nurses initiating discussions about hospice care with patients and their families. The findings showed that nurses who had prior experience with hospice, more in-depth knowledge, and a higher degree of comfort in initiating such conversations were more likely to discuss hospice care with patients.
Patient and Caregiver Relationship
The relationship between hospice patients and their caregivers is a crucial component of the care experience, particularly in terms of symptom management. McMillan and Moody (2003) explored the congruence between patients’ and caregivers’ reports of symptom intensity for pain, shortness of breath (dyspnea), and constipation. Their research revealed a significant discrepancy: caregivers tended to overestimate the severity of the symptoms compared to the patients’ own assessments. This overestimation is significant because it often informs the clinical decisions made by hospice nurses, who may adjust care based on caregivers’ reports rather than patients’ self-reported experiences.
Similarly, a study by Rhodes, McDaniel, and Matthews (1998) involving 53 hospice patients found that nurses, like caregivers, often overestimated the intensity of symptoms. This discrepancy raises important questions about the training and education of both informal caregivers (family members) and professional caregivers (nurses), as accurate symptom assessment is crucial to providing appropriate care. While some studies suggest that nurses’ assessments may be closer to patients’ self-reports than those of family caregivers, the tendency to overestimate certain symptoms, particularly pain, persists.
Nursing Care and Quality of Life
The concept of quality of life (QOL) is central to hospice care, as the primary goal is not to cure the patient but to improve their overall well-being during the final stages of life. N. Hill’s study in 2002 explored how hospice patients assessed their quality of life and how nursing care could be adjusted to improve it. Hill emphasized the importance of understanding the patient’s perspective on what constitutes a good quality of life. This knowledge allows hospice nurses to tailor their care plans more effectively to meet the unique needs and desires of each patient.
Hospice care focuses on holistic well-being, addressing not only physical symptoms but also emotional, spiritual, and psychological aspects of the patient’s life. The nurse’s role is critical in ensuring that the patient’s quality of life is maximized, even in the face of terminal illness. Reflective practice, in which nurses continually assess and improve their caregiving approaches based on patient feedback, is essential to delivering compassionate, patient-centered care in a hospice setting.
History of Hospice Nursing
The history of hospice nursing is rich with research exploring the context in which care is delivered. One study by Rasmussen and Sandman (1998) compared how patients in oncology units and hospice settings spent their time. They found that while family members and nurses spent more time with hospice patients than oncology patients, much of the nurses’ time was consumed by performing tasks rather than engaging in meaningful interactions with the patients. This finding suggests that, despite the emphasis on emotional and psychological support in hospice care, the demands of physical caregiving tasks can sometimes limit the amount of time nurses have to simply “be with” their patients.
Death Anxiety and Hospice Nursing
The emotional toll of working with terminally ill patients is significant, and the phenomenon of death anxiety has been studied among hospice nurses. Payne, Dean, and Kalus (1998) compared levels of death anxiety in hospice and emergency room nurses and found that the latter experienced higher levels of anxiety related to death. Hospice nurses, on the other hand, were more likely to have peer and supervisory support, which may have contributed to lower levels of death anxiety.
Other studies have also explored the emotional coping mechanisms employed by hospice nurses, with some researchers focusing on the role of education in reducing death anxiety among nursing students. Mallory (2003) demonstrated that exposure to hospice care during training could help nursing students become more comfortable with the concept of death, potentially reducing anxiety and fostering a more compassionate approach to end-of-life care.
How Hospice Care Affects Patients and Families
One of the primary goals of hospice care is to improve the quality of life for both patients and their families. Yeung, French, and Leung (1999) used the Hospice Care Performance Inventory to assess whether patient expectations aligned with the care they received. They identified six areas where patient expectations and the effectiveness of care were not congruent, including issues related to self-care and mobility. Many patients expressed a desire to maintain their independence by performing self-care tasks, but hospice staff often took over these tasks, leading to a sense of helplessness for some patients.
Other areas of concern included managing patients’ fear of death, providing sufficient rest, and offering reassurance. Interestingly, pain relief was not the highest priority for most patients, suggesting that other aspects of care, such as emotional support and preserving dignity, may take precedence.
Research has also examined how hospice care influences caregivers. A study by Kabel and Roberts (2003) investigated the ways hospice staff in northwest England normalized the symptoms of terminal illness and supported the concept of patient personhood