Nature of the Problem
Palliative care can be assimilated to a philosophy of care for people who desire to have a good quality of life in their terminal stage of illness (Hiatt, 2007). The goal of palliative care emphasizes the maximization of the quality of remaining life (National Ethics Committee, 2007). The traditional role of comforting terminally ill patients as they face their final days has been recently neglected by modern foci in medicine despite the advance of the latter in biomedical research and the ability to treat long-term illnesses. In addition, there is no palliative medicine specialist in the United States. There is, therefore, the need to increase focus in the field of palliative medicine in terms of increasing specialists, conducting research, and boosting interest in the field among current practitioners. Research has frequently confirmed that quality of life is dependent on the care being given in a personalized and compassionate manner (Murray, 2008).
Palliative and hospice care has emerged as an important field in today’s society in the face of inefficiency in the healthcare system, aging of the population, and shortage of healthcare practitioners, among other factors. End-of-life care is necessary to increase patients’ quality of life as well as to ease the transition into death. Caring for the elderly at home has also become an interest in the field of geriatric health care. The latter may involve components of end-of-life care. There is a necessity to equip registered nurses, licensed practical nurses, and certified nursing assistant staff with end-of-life care skills to improve the practice. The efficiency of Hospice and Palliative Care practitioners is also an important aspect of end-of-life care; therefore, the organization of services and facilities must provide support for end-of-life care. Equipping of the aforementioned practitioners to enhance end-of-life care includes the provision of education and other skills to make them aware of what end-of-life care means, the importance and necessity of end-of-life care, how to achieve end-of-life care, and to enable them to handle end-of-life patients through practical experience. Of the 2.5 million people who die in the United States yearly, many of those who die at ages above 65 do so from complications of neurobiological disorders like Parkinson’s, Alzheimer’s, or stroke. Additionally, the need for improvement in the care provided by those responsible to care for the dying has been necessitated by the wide range of clinical disorders (Cassel & Kathleen, 1999). These practitioners are exposed to these types of patients from time to time.
Purpose of the Study
The current study seeks to analyze the field of palliative and hospice care in current medical settings and how much interest has been given to the field. The research will explore the components of end-of-life care such as modifiable and non-modifiable elements, as well as necessary interventions. The study seeks to establish ways through which palliative and hospice care can be improved by enlightening the importance of it among current medical practitioners, including registered nurses, licensed practical nurses, and certified nursing assistants. This research will explore the various issues to be covered in programs that focus on enlightening medical practitioners in improving palliative care. There is a need for medical practitioners to have a common focus on the basic principles of end-of-life care as well as understand that various clinical care demands exist among patients. While some patients may require highly specialized care, others may not need or desire it.
This palliative and hospice care study shall establish the existing situation in the field as it relates to the focus on the current medical setup and the capability of registered nurses, licensed nurses, and certified nursing assistants to handle end-of-life patients. Knowledge of the current competence of medical practitioners in the field of palliative and hospice care would help improve the situation by seeking to establish ways in which competence can be enhanced. Application of research-based methods and palliative care literature for training staff in palliative care would enhance the effectiveness, competence, and skills of practitioners. The health care industry needs to focus on improving pain management and other components of palliative care. The community would benefit from such a study in that the number of people treated through improved palliative and hospice care will increase; hence, suffering and deaths will decrease.
Awareness of the demand for palliative care would help healthcare institutions to increase their focus on these services to serve their customers more efficiently. In addition, management of staff and enhancement of their skills as they relate to palliative care boosts institutions’ capability to serve their customers well; for example, offering more complete healthcare services reduces costs incurred as a result of employing specialists because such an approach focuses on equipping a current staff.
What are the appropriate topics to apply in fostering education among nursing practitioners? This education will be facilitated to the Nurses and practitioners by a PowerPoint presentation. What is the status of palliative care in medical practice?
Review of the Literature
Studies have proved that many Americans do not have access to end-of-life care. It was revealed in a study that 40% of patients aged 80 and above experienced severe pain during their last three days of life (Vig, 2002, p. 1541). The recommendations issued by the Institute of Medicine on addressing the deficiencies identified at the end of life include strengthening the knowledge base for end-of-life (Vig, 2002, p. 1541).
Nursing homes in the United States have been termed as increasingly becoming places of death given the increasing number, frailty, and age of terminally ill individuals residing there (Weitzen et al., 2003, Holtzman et al., 1996, as cited in Renée et al., 2005, p. 1651). These numbers include patients transferred there from hospitals during their final days. In contrast to the beginning of the twentieth century, when most people died at home, a quarter of the deaths in the United States now occur in nursing homes (Renée et al., 2005, p. 1651). Recently, more people have been able to postpone, if not avoid, admission to nursing homes thanks to options that are increasingly becoming available. Considerable physician presence at nursing homes has been the expectation of families and residents owing to their perception that such places are healthcare institutions. Concerns have been raised about the insufficiency of staff for good care, pain treatment, and appropriate assessment of end-of-life care in nursing homes (Teno et al., 2004; Harrington et al., 2001, cited in Renée et al., 2005, p. 1651). Many problems such as (a) dissatisfaction of residents and their family members with nursing homes, (b) poor communication and decision-making, (c) inadequate symptom management, (d) high rates of hospitalization, and (e) mistaken patient diagnosis have been linked to inadequate physician presence in nursing homes (Hanson et al., 1997; Mehr1 et al., 2003, Hanson et al., 2002; as cited in Renée et al., 2005, p. 1651).
Data collected in 2005 by the National Hospice and Palliative Care Organization and the National Association for Home Care and Hospice shows updated facts and figures. This was done as a part of November’s National Hospice and Palliative Care Month (See Appendix A). People with end-of-life illnesses who availed of hospice care numbered 1.2 million, an increase of 150000 from 2004. 800000 had died while 200000 had been admitted and still alive in 2006 and 200000 were discharged alive. It was found that one-third of all deaths happened to be people in the hospice care program. Length of hospice care lasted from 57-59 days. The number of hospice programs increased from 3650 to 4160.
In 1996, a group involving medical specialties, subspecialties in internal medicine (including the American Medical Association), and 13 surgical specialties agreed to work within their respective societies to develop clinical methods, tools, and guidelines to meet agreed-upon needs regarding the access and quality of clinical care at the end of life (Cassel & Foley, 1999). The aforementioned group came up with a set of principles for end-of-life care that was organized into 11 core principles, which were then issued to representatives to take to their societies for consideration and implementation.
The core principles included the need to promote clinical and evidence-based research on providing care at the end of life. Providing access to palliative care and hospice care, offer continuity of care if the patient desires his and her primary care and specialist providers. In addition, the provision of therapy is realistically expected to improve end-of-life care as well as assess and manage psychological, social, and spiritual/religious issues (Cassel & Foley, 1999). According to Cassel and Foley (1999), other principles agreed upon included: (a) respecting the right of the patient to refuse treatment, (b) discontinuing some treatments when appropriate while remaining considerate of the family’s and patient’s preferences, (c) having sensitivity towards and respect for patients’ and families’ wishes, and (d) respecting the dignity of caregivers and patients.
The adoption of the core principles was carried out by some societies such as the American Medical Association (AMA, ); who, in their submission expressed that they would expect eight elements of care to be observed by physicians, health care institutions, and the community as patients in the end-of-life phase sought peace and dignity (Cassel & Foley, 1999). Furthermore, Cassel and Foley (1999) noted that the Academy of Psychosomatic Medicine (APM), for its part, focused on several issues, including attention to psychiatric complications of terminal illness, by conducting related research through young investigators who were trained in this area. According to these authors, research was expanded through collaboration with private foundations and governmental funding agencies (Cassel & Foley, 1999).
Researchers have used various tools to enquire about the desired end-of-life. An example of a survey questionnaire is provided in Appendix B. The participants need only to select a score between 1 and 7 which was the range to show strong disagreement or agreement or other aspects. The score may be compared using a Likert-type scale. Appropriate conclusions can then be made. Appendix C is a tool that was used among veterans in a hospice care unit. It has been used in a study on veterans to find out their end-of-life wishes and their opinions on various issues concerning palliative care.
The importance of patients having an active role in determining the quality of end-of-life care has been discussed. Preferences of patients may help the health professionals to understand them and develop patient-centered care plans (Vig et al., 2002). Terminally ill adults and older adults are the two distinct populations that face end-of-life issues and that have higher mortality rates than other populations. There has been a belief among investigators that caregivers and healthcare providers may not accurately interpret the dying experience of others (Higginson et al., 1996, as cited in Vig et al., 2002, p. 1542). For example, older adults’ preferences for end-of-life interventions like resuscitation are not understood adequately among healthcare providers or the patients’ families (Uhlmann et al., 1988, Seckler et al., 1991, as cited in Vig et al, 2002, p. 1542). It has been found in one study that end-of-life treatment preferences among older adults were influenced more by the anticipated outcome of serious illness than the medical interventions employed to sustain life (Rosenfeld et al., 2000; as cited in Vig et al, 2002, p. 1542). According to Vig et al. (2002), the latter research failed to address the views of older adults about good and bad deaths, the associations between current values and preferences for the end-of-life, and the reasons for the preferences. Nursing homes must understand the expectations of the patient residents and their families regarding the need to have adequate staff on-site as well as maintain high standards, such as staff that are highly qualified to provide palliative care. Training existing staff can ensure the latter. This is because specialists in palliative care are scarce and may be expensive to employ to meet demand, and/or existing specialists in the institutions may not serve patients’ needs satisfactorily. Pain management is an important aspect of palliative care and nurses must learn practical skills for reducing pain in patients to reduce their suffering. Institutions must also be informed that such practices may be covered by the law; and, therefore, that they need to know the practical strategies to implement so that it will not be difficult for healthcare practitioners to offer palliative care to their patients. Such practices include the use of certain drugs and procedures of pain management, as well as an emphasis on the ethics, as well as the legal, implications involved in the management of palliative care, and ensuring that nurses understand the foregoing.
Cassel and Kathleen, (1999) cite that the efficiency of Hospice and Palliative Care practitioners is also an important aspect of end-of-life care; therefore, the organization of services and facilities must provide support for end-of-life care. In other words, equipping the aforementioned practitioners to enhance end-of-life care includes the provision of education and other skills to make them aware of what end-of-life care means, the importance and necessity of end-of-life care, how to achieve end-of-life care, and to enable them to handle end-of-life patients through practical experience. Cassel and Kathleen (1999) further state that 2.5 million people die in the United States yearly, many of those who die at ages above 65 do so from complications of neurobiological disorders like Parkinson’s, Alzheimer’s, or stroke. In addition, the need for improvement in the care provided by those responsible to care for the dying has been necessitated by the wide range of clinical disorders.
Establishing a common focus and basic principles that underlie the roles and responsibilities of medical practitioners in end-of-life care is necessary because different specialties may see different aspects regarding the care of dying patients (Cassel & Kathleen, 1999). Differences exist among the patients as relates to the type of or the extent of clinical needs (Institute of Medicine, 1997; cited in Cassel & Kathleen, 1999). While some patients may require highly specific specialty care, others may not.
Statistics indicate that more than 2 million people die every year in the United States (Austin, 2003 cited in Harrison, 2007) but the mechanism of health care delivery is fragmented. End-of-life care uses 10 % of the total health care budget and 27 % of the Medicare budget. Appropriate use of hospice during the last month could help save 46.5%, if used during the last six months 17 % savings could occur (Emanuel, 1996 cited in Harrison, 2007). The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering using early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”(2002). “Early interventions, good support systems, and multidisciplinary approaches” are important (WHO, 2002). It is known that though most deaths occur in hospitals, integrated palliative medicine programs are minimal in number (Estfan, 2008). One study showed 40% of patients who were discharged from the Taussig center were ready for admission for palliative care (Walsh, 2001). Two groups have been recognized as suitable for palliative care: the chronically ill and the dying.
Education and research
Education and research are of utmost importance to the program (Nelson and Walsh, 2003). The first center to develop a comprehensive integrated palliative medicine program was the Harry R. Horwitz Center at the Cleveland Clinic Foundation. Advancing illnesses require continuity in care whether as inpatient or outpatient. Research has suggested the different forms of knowledge that contribute to the needs of real patients (Aoun and Kristjanson, 2005). This includes instrumental knowledge, interactive knowledge, clinical knowledge, and nursing knowledge. The instrumental knowledge pertains to the traditional approaches of care with control of the environment. The interactive knowledge comes from sharing lived experiences and understanding human relationships. Clinical knowledge is obtained from the reflection of experiences where the solutions to alleviate problems are reconsidered. Nursing knowledge includes empirical or scientific information and depends on personal acumen, aesthetic or empathetic ability, and following ethical or moral patterns (Aoun and Kristjanson, 2005).
Role of families
The role of families in terminal care is significant (Resnizky, 2007). Pain, nausea, constipation, weakness, and mental distress are some of the problems faced. The patients and families must be provided with comforting reassurances, pain killers, and symptomatic treatment. A secure feeling is to be imparted to them. Sensitive and supportive communication at the appropriate times would do plenty of good to the patient and family. Terminally ill patients have difficulty expressing themselves (Resnizky, 2007). The nurse attending must understand the problem and react accordingly. Even when battling the illness, the patients retain the sense of values, vivid experiences which they have difficulty to share and perceptions of reality. Family members who act as spokesmen for the patient may be able to tell what the patient wants to formal caregivers. Some family members may not be reliable (Resnizky, 2007). They exaggerate the real symptoms. Practitioners must enquire directly from the patient before proceeding to act.
Community palliative care
The community-based hospice caregiver is the spouse or other close family member (Harrison, 2007). The patients who come under this group are usually more than 75 years old and on Medicare. However, it is the nurse practitioner who guides the caregiver. She provides her valuable advice born out of a high level of knowledge acquired through education and experience. Skilled nursing, bereavement counseling, dietary services, and physician services are coordinated by Medicare. With the introduction of hospice care, a shift has occurred from curative treatments to palliative care (Harrison, 2007). The effective hospice program can reduce the hospital stay and thereby increase savings as inpatient utilization would be reduced. It increases “quality of care, patient and family satisfaction, patient compliance and quality of life (Teno, 2004 cited in Harrison, 2007). District Nurses provide hands-on nursing care to patients who remain at home in Australia. They provide palliative care too to elderly patients. Their function helps the elderly and end-of-life patients to remain at home. They are described as ‘patient assessors, care-coordinators and team leaders” (Shipman et al, 2008). Their role is recognized as “Making a difference”.
Educational program effectiveness
The Department of Health in England spent £6m for a national education and support program which lasted 3 years. Ten thousand of the District Nursing teams were trained for their function as palliative care teams (Shipman et al, 2008). Initially, a core curriculum was prepared. Patient and carer needs were assessed. Issues were anticipated. This resulted in the good management of symptoms. Specialists if needed were approached for their specialist support and advice. Communication and counseling skills were sharpened. Bereavement care and the breaking of bad news were advised upon. The topics were selected according to the knowledge level of the District Nurses (Addington-Hall et al, 2006 cited in Shipman et al, 2008). Learning tools were varied. Core topics were taught to the District Nurses. Formal teaching resorted to most of the time. Some teachers used the experiential method.
The Nurse professionals
A nurse practitioner is defined as a “Registered Nurse with appropriate accreditation who practices within a professional role. She/he has autonomy in the work setting and has the freedom to make decisions consistent with her/his scope of practice, and the freedom to act on those decisions” (Wilson and Shifaza, 2008). Overall satisfaction with the treatment offered by the nurse practitioner was examined by using a questionnaire (Wilson and Shifaza, 2008). 91.3% of patients indicated that they were satisfied with the overall care they obtained. 93% showed that they were extremely happy with the competency of the nurse practitioner. 56% believed strongly that their care was nearly perfect. 31.6 % of the participants thought their treatment was delayed. 90% thought that they were treated very courteously by the nurse practitioners and 84.2 % had no doubts about their ability (Wilson and Shifaza, 2008). 19.3 % of patients only felt ignored and 15.8 % did not know what they were experiencing. 70.2 % vouched for the nurse practitioner’s competency and satisfaction with the total care. Only 3.5 % were dissatisfied. This study was conducted for determining the ability of the nurse practitioner in the emergency room. It can be assumed that the nurse practitioner’s efficiency is accepted and people are ready to get care from her (Wilson and Shifaza, 2008).
Ethics and morality
Nursing has a moral dimension (Wright, 2009). The “concepts of care, integrity, trust, and personhood” in nursing are morally relevant aspects. Palliative care makes all these aspects exemplary. The mission of palliative care is about responding to suffering (Kinlaw, 2005 cited in Wright, 2009). Compassion is the alternative when the nurse responses do not produce the desired effect of alleviating symptoms. Her competency helps her to counter moral or ethical dilemmas through “logical and reasoned analysis” (Rodney, P. et al, 2004 cited in Wright, 2009). Palliative care nurses make relationships with the family but professional standards are lacking to guide family nursing practice in these relationships (Meiers, 2008 cited in Wright, 2009). The complex nature of experience-as-lived in palliative care cannot be fully addressed by ethical standards related to nursing.
Methodology and Procedures
The research undertaken in this study will be a developmental research methodology that focuses on prior research. In this study, past research on palliative and hospice care has been analyzed and the former status of palliative care established through consideration of past research articles.
It has been established from past research that the demand for palliative care exists because patients in need of end-of-life care continue to flock to hospitals and because those who choose home care and other options need end-of-life care. The literature applied in this research varies in time, and we assume that it is the most recent. The literature establishes that there is a shortage of practitioners who are specialized in or focused upon providing end-of-life due to the existing demand for palliative care. Hence, it is the conceptualization of the researcher that medical institutions can solve the existing problem by training current staff on palliative care. This will boost the number of staff who can provide palliative care.
It has been established in this paper that, although the demand for specialized palliative care is high, medical practitioners do not understand older adults’ preferences regarding end-of-life care. Indeed, the literature has not yet explored this subject. To train staff, there is a need for an educational program that deals with a range of topics and will seek to create knowledge and awareness of the subject matter. The topics to be featured include: (a) the need for palliative care, (b) the demand among patients for the same, and practical skills for meeting the needs of the patients, such as inquiring into and investigating their preferences and those of their families before developing plans for palliative care. Other topics include the need to organize the working staff to agree on the common or basic principles of palliative care. Nurses must be aware that they are each empowered to solve patients’ needs or enlist his/her colleagues to help provide patients with palliative care since they will interact with such patients now and then in their careers. Staff must be committed to assisting without terminating care to patients unless the patients are willing to do so. Other topics include: (a) increasing nurses’ efficiency in providing palliative care to save lives and (b) the particular illnesses that may pose the greatest danger to patients, such as cancer.
Nursing homes must understand the expectations of the patient residents and their families regarding the need to have adequate staff on-site as well as maintain high standards, such as staff that are highly qualified to provide palliative care. The latter can be ensured by training existing staff. This is because specialists in palliative care are scarce and may be expensive to employ to meet demand, and/or existing specialists in the institutions may not serve patients’ needs satisfactorily. Pain management is an important aspect of palliative care and nurses must learn practical skills for reducing pain in patients to reduce their suffering. Institutions must also be informed that such practices may be covered by the law. Therefore, the need to know the practical strategies to implement that it will not be difficult for healthcare practitioners to offer palliative care to their patients. Such practices include: (a) the use of certain drugs and procedures of pain management. (b) an emphasis on ethics. (c) the legal, implications involved in the management of palliative care, and ensuring that nurses understand the foregoing.
One of the assumptions in the above methodology is that the literature considered discusses the current situation or covers the current status of palliative care. This may be somewhat true because evidence of the shortage of nurses and problems with inefficiency in healthcare systems have lately been reported. It is also true that several Americans, for example, do not have health insurance and, therefore, such problems as obtaining end-of-life pain management would be expected. Another assumption is that the literature considered covers individuals in most or all locations. Of course, there are differences in terms of the availability of palliative care, even within countries like the United States. For instance, individual states may adopt various measures in healthcare that may have quickened or slowed down the focus on palliative care. Other differences exist in the implementation of strategies to take care of patients and focus on palliative care among different hospitals. Another assumption is that there is agreement among the studies that have focused on palliative care. Of course, differences of opinion on the efficiency, methods, and how to achieve palliative care may exist concerning theory and practice.
Various limitations to this research are evident; for instance, analysis of data could have presented a more accurate assessment of the state of palliative care. Data-driven evidence may have communicated the message more strongly. Research in this case dealt with limited literature on palliative care, and expansion of this theory would have been important. Although the literature brings out the diversity amongst healthcare institutions as pertains to the implementation of palliative care to some extent, consideration of more case studies would have been more influential.
A review of the literature has provided a vast and rich knowledge on palliative care and the various aspects connected with it. Literature has provided a picture of the competency of the nurse practitioner and other nurses. Palliative care depends on the ability of the nursing professionals to effectively handle the issues of terminal illness, timely moral support to the patient and family, and symptomatic relief to distressing symptoms possible in end-of-life situations. The various stakeholders depend on the nurses to discharge the palliative care efficiently. Preparing them for the task through education is the best way to ensure good palliative care and raise the quality of life of the terminal chronic patient and the dying. The significance of palliative care has been established in society with the increasing elderly population. Inefficiency in the healthcare system, aging of the population, and shortage of healthcare practitioners, among other factors, have emphasized the necessity of end-of-life care to increase patients’ quality of life as well as to ease the transition into death. Equipping the nurse includes the provision of education and other skills to make them aware of what end-of-life care means, the importance and necessity of end-of-life care, how to achieve end-of-life care, and to enable them to handle end-of-life patients through practical experience. One significant point that has been understood is the lack of awareness about end-of-life options by the public. Awareness of these options would imply that they are not missing any health care possibilities that they could opt for. End-of-life preferences vary individually. End-of-life care is a reality but allowing terminal patients to have a better quality of life through interventions of medical, emotional, spiritual, financial, and relational issues is a difficult proposition. The first step towards the improvement of palliative care would be to educate nurses.
Discussion, Conclusions, Implications, and Recommendations
End-of-life care or palliative care happens to be one of the most neglected of the health care services for a client. Policies and standards of care must be evolved for knowing how clients would want to live their last days. Opportunities must be provided to the clients before they become too incapacitated to express their desires on how to spend their terminal days. Promoting the skill of nursing professionals who are in one-to-one contact with the dying would ensure a change in the quality of life of the patients for the better. Being prepared for stressful situations raises the quality of care. Legal issues also must be well thought out and ethical and moral standards advocated by the professionals who are involved. Clinical practice guidelines must be well documented and formatted so that clinical decision-making is guided. Outcome-focused guidelines must be in place. Health professionals must be well aware of the distress undergone in the terminal stages of life. The patient would have gone beyond the stage where the underlying illness cannot be suppressed any longer. He would be given mere symptomatic treatment for temporary relief. The emotional dimensions experienced by the patients would frequently subject the health professional to ethical dilemmas. Expectations that their emotional and physical distress would be addressed is a complexity that requires the expert handling of the health professional. Communication with the patient using empathetic listening and open questions improve the interactions between the patient and provider. Summarizing the main desires, putting encouraging questions, and providing written information improve communication. Providing relevant information on the illness and discussing strategies or interventions brings the patient closer and feels respected. Prognosis and treatment options may be discussed. Patients may be prepared for potentially threatening situations or interventions.
They must be informed about the transition of management from treatment to palliation. Apart from emotional and social support, practical and financial support may be required. Continuity of care must be ensured. Reducing anxiety and recognizing grief is significant in the terminal stages. Cultural and linguistic diversity must be recognized and adjusted for while dealing with end-of-life care. Younger patients are more vulnerable to psychosocial distress. Equipping the nursing professionals enables all the requirements of patient-provider interaction in the end-of-life situation. The nurse is the person who directly deals with the ill person. Her support decides what palliative care the patient has obtained. If the nurse becomes an expert in her field, the patients who are in palliative care would reap the benefits.
Palliative care has several requirements. Physical and emotional issues must be managed. Better functioning must be possible and autonomy establishes as a key objective. Patients must be encouraged to express their death wishes early. Equipment used must be judiciously managed, not overused. The patients and families must be convinced that the death wishes are considered. The patient’s wishes must be respected. Continuity and skill in end-of-life must be promoted. Nursing professionals must be educated and equipped ethically and morally for improving palliative care. Policies and legislation must be adequately revised. The current standards must compensate for the neglect in palliative care and reverse the potentially devastating impact on the security of health care for the future.
It is distressing for any individual to think about end-of-life situations and their issues. whether the options are known totem or not. Not knowing makes the issue more confusing and the problem of missing out on the options also arises. Health providers or nurse professionals must educate the public on the options available. The information must reach them long before they reach the stage for palliative care.
This practicum will raise the awareness of palliative care and the significance of educating the nurse professionals for providing efficient palliative care. Educating the nurses who form the backbone of the healthcare industry greatly improves the quality of life of end-of-life patients who wish to have a less stressful and peaceful end. The extended skills of the nurses, experience, and expertise in assessment, planning, implementation, diagnosis, and evaluation of care will provide a suitable change of the palliative care environment. Their sharp acumen will influence the patients, families, other staff, and organization in their approaches to hospice care. Palliative care must mature from end-of-life into integrative health services. The nurse professionals can assume the roles of charismatic leaders who can lead the rest of the organization to a transition in palliative care.
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Sample of Quality Care at the End of Life Survey
Please rate the following aspects of quality end of life care based on how effective you believe our current care is. Use your cursor to highlight the number you choose and replace it with an “x”.
Structure and Processes of Care
- Strongly Disagree
- Strongly Agree
- The plan of care is based on patient/family goals with consideration of the changing benefits/burden of care.
- Staff have the necessary knowledge and skills required to care for dying patients and their families.
- There is effective continuity of care across settings (ICU, inpatient units, hospice).
Physical Aspects of Care
- Pain is effectively assessed and managed.
- Other symptoms (e.g. dyspnea, agitation) are assessed and managed
- Consultation is available and effective in managing pain and other symptoms.
- Treatment of pain and symptoms addresses physical, psychological, social and spiritual aspects and incorporates pharmacologic and nonpharmacologic/supportive therapies.
Psychological/Psychiatric Aspects of Care
- Consultation is available and effective by clinical psychology.
- Consultation is available and effective by a psychiatrist.
- Consultation is available and effective by staff (e.g. “Transitions” program) skilled in bereavement.
- Assessment is used to identify people at risk of complicated grief and bereavement.
- Bereavement services are routinely provided to families following the death of a patient
Social Aspects of Care
- Consultation is available and effective by clinical social work.
- The plan of care reflects important information regarding family relationships.
- Family meetings are conducted in a timely manner to provide information, assist in decision-making, determine wishes and enhance communication.
- Family members are supported through this time of critical illness and death.
Spiritual and Existential Aspects of Care
- Staff are knowledgeable and sensitive to diverse religious/spiritual needs.
- Spiritual assessment is used to identify preferences, rituals, beliefs and concerns.
- Pastoral care/chaplaincy is available and effective.
Cultural Aspects of Care
- Cultural background, concerns and needs of the patient and family are elicited and documented.
- Communication with patients and families is respectful of their cultural preferences regarding disclosure, truth telling and decision making.
Quality Care at the End of Life Survey
Care of the Imminently Dying Patient
- The patient’s transition to active dying is recognized, documented and communicated appropriately to patient, family and staff.
- Patient/family are offered choices when possible regarding place of death.
- Families are educated regarding signs and symptoms of approaching death.
- Emotional and spiritual support is provided to the patient and family during the dying process and bereavement period.
- Optimum care is provided in the pronouncement of death, procedures for organ/tissue donation, offer of autopsy.
- Patient or surrogate preferences are documented through advance care planning and are honored.
- Ethical concerns are recognized and addressed in a timely way.
- There is appropriate and timely referral to the Ethics Committee
- Do Not Resuscitate orders are written in a timely way
- Overall, please rate the quality of the following:
- Low quality
- High quality
- Your own practice in end of life care
- Your colleagues practice in end of life care
- The institution’s (COH) overall care for dying patients.
- Rate how frequently the following ethical dilemmas occur in your practice setting
- Very Common
- Providing honest information vs. destroying hope
- Preserving informed patient choices
- Patient and family with differing goals
- Use of advanced directives
- Withholding /withdrawing life sustaining treatments (ventilators)
- Withholding/withdrawing food/fluids
- Discontinuing life supports
- Fear of causing death by giving pain medications
- Uncertainty about the patient’s prognosis
- Providing futile care (care with no hope of success)
- Continuing unnecessary lab work or diagnostic procedures
- Continuing futile care in fear of lawsuits
- Please rate the following barriers against optimum end of life care.
- Not a Severe Barrier
- Unknown prognosis
- Time expenditure needed for dying patients
- Staff avoidance of dying patients
- Cultural factors influencing End of Life Care
- Legal Regulatory restrictions
- Other cost considerations
- Patient/family reluctance to accept death
- Focus on cure/research versus comfort
- Palliative care as a core value/mission
A Questionnaire for the Veterans developed by the Veterans Health Administration
- What is your understanding as to why you are here in the Trauma Care Unit at the Veterans Hospital?
- What is your understanding of your diagnosis/illness?
- What is your understanding of hospice or palliative care? What do those terms mean to you?
- What could make you most comfortable here?
- Do you know what an advanced directive is? Do you have someone who can help you with it?
- What are your wishes regarding funeral arrangements? Have you made any arrangements or does your family know about it?
- Do you have family and do they know that you are here with us. If they were to call, would you like me to tell them of your status or is there anyone you would want us to call to notify them that you are here?
- How can we honor your spiritual beliefs while you are here?
- At this stage in your life, what is the most important thing to you?
Source: Running, A., Shumaker, N., Clark, J., Dunaway, L. & Tolle. L.W. (2009), Veterans preference for end-of-life care, International Journal for Older People Nursing, Vol. 4, p. 41-47 Blackwell Publishing Ltd.