HEALTH REFORM AND PALLIATIVE CARE: 2017 UPDATE

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1 HEALTH REFORM AND PALLIATIVE CARE: 2017 UPDATE Jassin M. Jouria, MD Dr. Jassin M. Jouria is a medical doctor, professor of academic medicine, and medical author. He graduated from Ross University School of Medicine and has completed his clinical clerkship training in various teaching hospitals throughout New York, including King s County Hospital Center and Brookdale Medical Center, among others. Dr. Jouria has passed all USMLE medical board exams, and has served as a test prep tutor and instructor for Kaplan. He has developed several medical courses and curricula for a variety of educational institutions. Dr. Jouria has also served on multiple levels in the academic field including faculty member and Department Chair. Dr. Jouria continues to serves as a Subject Matter Expert for several continuing education organizations covering multiple basic medical sciences. He has also developed several continuing medical education courses covering various topics in clinical medicine. Recently, Dr. Jouria has been contracted by the University of Miami/Jackson Memorial Hospital s Department of Surgery to develop an e-module training series for trauma patient management. Dr. Jouria is currently authoring an academic textbook on Human Anatomy & Physiology. Abstract Palliative care and hospice services that involve a whole interdisciplinary team approach aimed at improving patient-centered and quality of life outcomes are based on patient prognosis as well as patient and family preferences for treatment. Such an approach helps to avoid unnecessary health costs and improves patient and family satisfaction in services rendered. The current literature suggests that the shifting paradigm of palliative and hospice care away from prior medical models for end of life care have led to improved outcomes and even prolonged life for palliative care patients. The Affordable Care Act of 2010 had an important impact on the availability of palliative care services, creating new processes for palliative team members to improve services to patients and families needing services. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 1

2 Policy Statement This activity has been planned and implemented in accordance with the policies of NurseCe4Less.com and the continuing nursing education requirements of the American Nurses Credentialing Center's Commission on Accreditation for registered nurses. It is the policy of NurseCe4Less.com to ensure objectivity, transparency, and best practice in clinical education for all continuing nursing education (CNE) activities. Continuing Education Credit Designation This educational activity is credited for 4.5 hours. Nurses may only claim credit commensurate with the credit awarded for completion of this course activity. Statement of Learning Need Some health clinicians are unaware of how palliative and hospice care services have expanded to include new multidisciplinary team roles working together to transform end of life care for patients. Specialized palliative care team models enhance available services for patients in multiple health locations, including at home. Health costs will need to be better managed as multidisciplinary teams supporting palliative patients improve approaches to treatment for patients and their caregivers. Course Purpose To provide clinicians with knowledge of palliative and hospice care structures and processes and of the national legislation endorsing its need and benefit to patients and families. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 2

3 Target Audience Advanced Practice Registered Nurses and Registered Nurses (Interdisciplinary Health Team Members, including Vocational Nurses and Medical Assistants may obtain a Certificate of Completion) Course Author & Planning Team Conflict of Interest Disclosures Jassin M. Jouria, MD, William A. Cook, PhD, Douglas Lawrence, MA, Susan DePasquale, MSN, FPMHNP-BC all have no disclosures Acknowledgement of Commercial Support There is no commercial support for this course. Please take time to complete a self-assessment of knowledge, on page 4, sample questions before reading the article. Opportunity to complete a self-assessment of knowledge learned will be provided at the end of the course nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 3

4 1. People in the United States now live an average of after they receive a terminal diagnosis. a. six months b. one year c. thirty months d. 24 months 2. True or False: Modern palliative care is limited to the treatment of terminally ill patients and is focused on extending both quality and quantity of life. a. True b. False 3. Which of the following defines or describes the role of palliative care in treating patients? a. Palliative care affirms life and disregards dying. b. Palliative care is applicable during the last 6 months of an illness. c. Palliative care intends neither to hasten nor postpone death. d. All of the above 4. The role of palliative nursing is to assess needs of the patient and the patient s family related to their a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above 5. Palliative intervention is distinct from specialized palliative care because palliative intervention distinctively concerns intervention a. when the disease is not curable. b. for cancer patients only. c. that is vital in all clinical practice for illnesses at all stages. d. that is intended to postpone death. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 4

5 Introduction Although palliative care has its roots as an essential part of hospice care, modern palliative care has evolved to encompass the treatment of non-terminal illness and injury in an effort to extend both quality and longevity of life. Advancements in treatment options, along with improved access to medical professionals and extended benefits for Medicare beneficiaries, have made the field of palliative care an emerging and rapidly expanding health service. The Affordable Care Act of 2010 had an important impact on the availability of these services and, while there is still opportunity for improvement, the field of palliative care is on track to continue its growth in upcoming years. Palliative Care And Quality Of Life The Affordable Care Act did not explicitly address palliative care, but it did make some potential improvements to hospice services. There are opportunities in payment reforms and quality improvement initiatives that will hopefully have a positive impact on cancer patients, both terminal and those who will become survivors. It is imperative that palliative care be addressed and not avoided in some of the bundling payment and Accountable Care Organization (ACO) pilot programs, no matter how operationally challenging this may be. With a rapidly aging population that faces more chronic diseases than any previous generations, palliative care cannot be excluded from legislation and coverage. 1 Palliative care focuses on achieving the best possible quality of life for patients and their family caregivers based on patient and family needs and goals, independent of prognosis. Interdisciplinary palliative care teams assess and treat symptoms, support decision-making and help match treatments to meet patient and family goals, mobilize practical aid for patients and their family caregivers, identify community resources to ensure a safe and secure living environment, and promote collaborative and seamless models of care across a range of healthcare settings (i.e., hospital, nursing home and in-home care). nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 5

6 In the United States, palliative care is provided both within and outside hospice programs. Palliative care outside hospice is offered independent of the patient's prognosis and simultaneously with life-prolonging and curative therapies for persons living with serious, complex, and life-threatening illness. Ideally, palliative care should be initiated concurrently with a diagnosis of a serious illness and at the same time as curative or disease-modifying treatments, given the near universal occurrence of patient and family distress and their need for information and support in establishing achievable goals for the patient's medical care. Unlike hospice, palliative care may be primary, secondary, or tertiary. Primary palliative care should be part of what all health clinicians provide patients (such as pain and symptom management, discussions about advance care planning); secondary palliative care is offered when the clinician refers to specialist-level palliative care experts for unusually complex or difficult problems; and, tertiary palliative care includes research and teaching in addition to specialist-level palliative care expertise. 2 Palliative care is a broad term that refers to care provided at any point in the trajectory of an illness for the purpose of alleviating physical and psycho-socialspiritual suffering, enhancing quality of life, effectively managing symptoms, and offering comprehensive, interdisciplinary support to the patient and family throughout the course of illness, regardless of stage of disease. Palliative care also helps patients and families make difficult medical decisions that enable them to work toward their goals, especially as outcomes become more uncertain. Palliative care ideally begins at the point of initial diagnosis of a serious, potentially life-limiting illness and can be delivered concurrently with other therapies that are intended to cure a disease or prolong life. If disease directed therapy stops working, palliative care can become the main focus of care. Although the primary focus is enhancing quality of life, palliative care also may positively influence the course of illness and even extend life if provided early nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 6

7 enough. Palliative care also encompasses care provided through the later stages of serious illness and dying. In the later stages of serious illness, palliative care includes end of life (EOL) care, which might involve referral to a formal hospice program as well as support of the family through the bereavement period. Hospice refers to an aspect of palliative care devoted to alleviating symptoms and enhancing quality of life during the last six months of life for patients who accept that disease-directed therapy can no longer benefit them. 3,4 Palliative care is a comprehensive approach to improve the quality of life for people who are living with serious or potentially life-limiting illnesses. Palliative care programs are made up of a multidisciplinary team of physicians, nurses, therapists, counselors, and social workers. The entire team works in collaboration together as well as with the patient and their family to provide the medical, emotional, and social support needed to cope with the burdens of a serious illness. Since no two patients are alike, palliative care treatments are tailored to the individual based on his or her medical needs and wishes for how they want to be treated physically, psychologically, and spiritually. Palliative care is a resource available for anyone with a serious or life-limiting illness. Some types of conditions that may be appropriate to receive palliative care include cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), Parkinson s disease, Alzheimer s disease, dementia, liver failure or end-stage kidney disease. Palliative care provides treatments for symptoms even if the underlying disease cannot be cured. The main goals of palliative care are to relieve the pain and suffering and discomfort associated with an illness and to reduce patient and family members stress. Palliative care can be provided in a number of healthcare settings including a patient s home, outpatient palliative care clinics, nursing homes, hospitals, or other specialized clinics. 5,6 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 7

8 As with any new specialty of medicine, hospice and palliative care is not well understood by either the public or the medical profession. This is generally not a comfortable topic, and the role of physicians to treat patients with EOL care needs is continually evolving. However, good EOL care is something that medicine must do. After all, it is often part of the problem. By curing many of the acute ailments, medical clinicians have created chronic disease. The dying process has become more complex, and now takes much longer. People in the U.S. now live an average of thirty months after they receive a terminal diagnosis. In addition to the human impact, there is also a huge economic impact. By some estimates, the average patient will spend 75% of the healthcare dollars over an entire lifetime during the last thirty months of life. Therefore, medical clinicians must treat suffering as well as disease. As suggested, sometimes in treating the disease, with modern technology, medical clinicians become the source of suffering itself. The wise health clinician knows when to transition from cure to palliation. 7 Palliative care of EOL patients encapsulates all facets of good family medicine. If a medical clinician performs family practice well, he or she will do palliative care well. However, while palliative care can be relatively straightforward, problems can arise that are beyond the skills of family medicine. Now that palliative care specialist teams exist there is backup advice and support for most family practice clinicians. But having specialist teams available in most locations is not a reason to cede all palliative care to them. Specialist teams cannot meet the demands of the number of people who are dying in any given time. It is in everyone s interest for family medicine clinicians to be competent and strong collaborators in this area of patient care. 8 The World Health Organization (WHO) 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 by means of early identification and impeccable assessment and nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 8

9 treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: provides relief from pain and other distressing symptoms. affirms life and regards dying as a normal process. intends neither to hasten nor postpone death. integrates the psychological and spiritual aspects of patient care. offers a support system to help patients live as actively as possible until death. offers a support system to help the family cope during the patient s illness and in their own bereavement. uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated. will enhance quality of life, and may also positively influence the course of illness. is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications. The WHO definition of palliative care for children states that it represents a special, albeit closely related field to adult palliative care, with principles related to pediatric chronic disorders. Palliative care for children: 9 is the active total care of the child s body, mind, and spirit, which also involves giving support to the family. begins when illness is diagnosed, and continues regardless of whether a child receives treatment directed at the disease. requires a broad multidisciplinary approach that includes the family and makes use of available community resources. can be provided in tertiary care facilities, in community health centers, and even in children s homes. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 9

10 The above definition reflects the 21st century view that palliative care is applicable whatever the life-threatening illness, and is the first time that the definition does not overtly refer to cancer. Indeed, more hospices and specialist palliative care units accept referrals of patients with diseases other than cancer. The objectives of palliative care are, therefore, to 1) palliate physical symptoms, 2) alleviate disease and maintain independence for as long and as comfortably as possible, 3) alleviate isolation, anxiety and fear associated with advancing disease, 4) provide as dignified a death as possible, and 5) support those who are bereaved. The palliative care movement was born out of the hospice movement and Professor Mount, a Canadian who worked with Cicely Saunders at St. Christopher s Hospice in London, first coined the term. Since 1987, palliative medicine has been recognized as a distinct medical specialty. 10 All lifethreatening illnesses be they cancer, neurological, cardiac or respiratory disease have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative medicine and nursing is therefore to assess needs in each of these areas and to collaboratively plan, implement and evaluate appropriate interventions aimed at improving the quality of life and to enable a dignified death. With the current growth of palliative care as a specialty, there can be some confusion as to the definition of specialist palliative care and how it is practiced. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) advocates the palliative care approach as a vital and integral part of all clinical practice, whatever the illness or its stage. A knowledge and practice of palliative care principles inform such an approach. Palliative intervention, on the other hand, involves disease intervention when the disease is not curable; sometimes known as generic palliative care. Specialist palliative care requires a high level of professional skills from trained staff, as well as a high staff to patient ratio. It refers to a service provided by a multi-professional team led by nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 10

11 clinicians with recognized specialist palliative care training. The aim is also to support patients and their families, wherever they may be, such as in the hospital, home or under the care of hospice. 2 End-of-life caregiving presents a number of particular challenges, including the necessity of making life and death decisions about matters such as whether to utilize life-sustaining treatments and hospice care, intense care demands, and witnessing pain and suffering in loved ones. Decision making at the end-of-life can be particularly stressful for families. Family members may be asked whether to begin tube feeding, institute antibiotic therapy for infections, or to decline medical procedures that might extend duration of life when the quality of life is poor. Presence of written advance directives or even a history of verbal discussions of EOL issues helps families cope. Family stress associated with the decision to withdraw treatment tends to be high immediately following the death of a decedent and, while it decreased over time, remained high half a year later. Research shows, however, that family stress is highest in the absence of advance directives; and, stress is lower when verbal advance directives guide the family, and lowest when written advance directives are in place. 11 Cultural diversity issues can become particularly prominent at the end-of-life as well, and may affect decision-making. For example, African American older adults are less likely than others to agree to withhold life-sustaining treatment even when quality of life is poor, and cultural values among many Asian groups discourage direct disclosure to dying patients and instead encourage decisionmaking by family members. 12 Palliative care utilization is consistently related to higher caregiver satisfaction with EOL care. Families report lower anxiety while caregiving and lower depression during bereavement when families receive palliative care. In addition, nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 11

12 EOL caregivers who are taught problem solving and coping skills have improved caregiver quality of life, and reduced perceived burden. Models of Palliative Care There are varied models of palliative care services and teams, as previously noted, and these are specifically described here. 13 Inpatient palliative care unit: Is within a general (secondary or tertiary referral) hospital Outpatient palliative care unit: Is detached or even distant from a hospital; often termed either a "freestanding unit" or a "hospice" Community palliative care service: Involves caring for patients at home, in nursing homes or living with relatives Hospital palliative care team: Operates with or without dedicated beds, in a secondary or tertiary referral hospital Day palliative care unit: Involves caring for patients living at home but able to be brought in for clinical and social care on a day basis The key features of palliative care are identified as: 13 Recognition and relief of pain and other symptoms, whatever their causes Recognition and relief of psychosocial suffering, including appropriate care and support for relatives and close friends Recognition and relief of spiritual/existential suffering nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 12

13 Sensitive communications between professional carers, patients, relatives, and colleagues Respect for truth and honesty in all dealings with patients, relatives and fellow professionals. Inter-professional/multidisciplinary team caring where possible Functions of Palliative Care Palliative care focuses on achieving the best possible quality of life for patients and their family caregivers, based on patient and family needs and goals and independent of prognosis. Interdisciplinary palliative care teams assess and treat symptoms, support decision-making and help match treatments to informed patient and family goals, mobilize practical aid for patients and their family caregivers, identify community resources to ensure a safe and secure living environment, and promote collaborative and seamless models of care across a range of care settings, as identified in previous sections (i.e., hospital, home, and nursing home). In the U.S., palliative care is provided both within and outside hospice programs. Palliative care outside hospice is offered independent of the patient's prognosis and simultaneously with life-prolonging and curative therapies for persons living with serious, complex, and life-threatening illness. Ideally, palliative care should be initiated concurrently with a diagnosis of a serious illness and at the same time as curative or disease-modifying treatments given the near universal occurrence of patient and family distress and need for information and support in establishing achievable goals for the patient's treatment, whether primary, secondary, or tertiary palliative care. As noted previously, primary palliative care involves pain and symptom management and discussions about advance care planning, secondary palliative care is offered when the primary clinician refers to specialist-level palliative care experts for unusually complex or difficult problems, nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 13

14 and tertiary palliative care includes research and teaching in addition to specialist-level palliative care expertise. 14 Palliative Care vs. Hospice Care Palliative care and hospice care are very similar when it comes to the most important issue for dying people their care. Most people have heard of hospice care and have a general idea of what services hospice provides. What they don t know or what may become confusing is that hospice provides palliative care and that palliative care is both a method of administering comfort care; and, increasingly, an administered system of palliative care is offered most prevalently by hospitals. As an adjunct or supplement to some of the more traditional care options, both hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counseling, and symptom treatment are administered through a single program. Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services. 15 Hospice services in the U.S. are delivered in a model established by statute in Medicare and followed by most other insurers. The Medicare Hospice Benefit is largely restricted to patients with a prognosis of living for six months or less, if the disease follows its natural course, who agree to forgo therapies with curative intent. Hospice is designed to provide comprehensive, interdisciplinary, teambased palliative care, mostly in a place the patient calls home, for dying patients with an identifiably short prognosis. Hospice care is appropriate when patients and their families decide to forgo curative therapies in order to focus on maximizing comfort and quality of life, when curative treatments are no longer beneficial, when the burdens of these treatments outweigh their benefits, or when patients are entering the last weeks or months of life. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 14

15 Hospice services are highly standardized by the Medicare Conditions of Participation, although the intensity and nature of those services are determined according to patient and family need and stage of illness (i.e., hospice services are typically most intensive in the last days of life when symptoms and family distress often peak). Hospice supports the family caregiver(s) throughout the care process and provides bereavement services to family members after the patient's death. 16 It is important to note that the prognosis-based distinction between palliative care (eligibility based on need, no prognostic restriction) and hospice (eligibility based on a prognosis of living less than six months) is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous. In fact, it was the need for palliative care for those patients not meeting the hospice eligibility requirement for a prognosis of living six months or less (those with serious or chronic illness who are not dying soon) that led to the recent rapid growth in hospital palliative care teams in the United States. The public at large knows the term hospice care better than palliative care. Palliative Care is the preferred term for health professionals particularly since it became a nursing specialty in so many countries, and palliative medicine became a medical specialty in the United Kingdom in Unfortunately, some health professionals continue to regard hospice as care for the dying provided either by well-intentioned volunteers or the ultra-religious. In North America, the term hospice is often used to describe not a building or care program but a philosophy of care Overview Of Palliative Care And Hospice Care Programs While palliative and hospice care share similarities in program measures to provide caring and comfort for the sickest of patients and their families, there are nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 15

16 some significant differences. This section reviews and expands upon the discussion on palliative and hospice care approaches raised earlier on, including locations, timing or availability of services and how each program is generally reimbursed. Palliative Care Palliative care is a comprehensive approach to improving the quality of life for people who are living with serious or potentially life-limiting illnesses. Palliative care programs are typically made up of a multidisciplinary team of physicians, nurses, therapists, counselors, and social workers, and, as raised earlier, the palliative care team works in collaboration with each other and with the patient and their family to provide medical, emotional, and social support needed to cope with the burdens of a serious illness. Palliative care treatments are individualized to meet medical needs and desires of each patient in terms of the patient s physical, psychological, and spiritual needs. Palliative care is a resource available for anyone with a serious or life-limiting illness. Types of conditions appropriate for receive palliative care include cancer, CHF, COPD, Parkinson s disease, Alzheimer s disease, dementia, liver failure or end-stage kidney disease. Palliative care provides treatments for symptoms even if the underlying disease cannot be cured. The main goals of palliative care are to relieve the pain and suffering and discomfort associated with an illness and to reduce patient and family members stress. Palliative care can be provided in a number of care settings including a patient s home, outpatient palliative care clinics, in nursing homes, hospitals, or other specialized clinics. 20,21 Location Palliative care teams, physicians, nurses, and other professional caregivers, are often at the facility where a patient will first receive treatment. In these settings, the palliative care team on staff will administer or oversee most of the ongoing nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 16

17 comfort care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team. 24 Timing There are no time restrictions to receive palliative care. Patients can receive palliative care at any time, at any stage of illness whether they are in the terminal stages of illness or not. Payment Since this service will generally be administered through the hospital or regular medical clinician, it is likely to be covered through regular medical insurance. It is important to note, however, that each item will be billed separately, just as they are with regular hospital and medical/clinical visits. If a patient receives outpatient palliative care, prescriptions will be billed separately and are only covered as provided by regular insurance. Inpatient care however often does cover prescription charges. 2 Treatment Since there are no time limits on when a patient can receive palliative care, a gap is filled for patients who want and need comfort at any stage of a disease, whether terminal or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided. It is important to note, however, that there will be exceptions to the general precepts outlined. There are some hospice programs that will provide life-prolonging treatments, and there are some palliative care programs that concentrate mostly on end-of-life care. 26 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 17

18 Hospice Care While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative approach of care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less. Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible during the time they have remaining. The hospice care team is also a multidisciplinary team made up of physicians, nurses, social workers, trained volunteers, and spiritual advisors. Hospice care can be provided in the home or in a facility such as a hospital, nursing home, or a dedicated hospice care facility. Patients entering hospice care understand that their illness or disease is not responding to medical treatment. By entering hospice, attempts to cure the patient s underlying illness are stopped. Stopping curative treatment does not mean discontinuing all treatment. For example, if a patient is being treated for high blood pressure with medication, he or she will continue receiving those treatments in addition to the treatments they are receiving to manage the symptoms of their terminal illness. Patients can elect to leave hospice care at any time if a decision is reached to resume curative treatments. Patients may also leave hospice care if their condition improves. 17,22 Location Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the primary care physician, a patient s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home or a specially equipped hospice facility, on occasion a hospital my involve placement (although this is not the norm). 23 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 18

19 Timing A patient must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from insurance. Payment Before considering hospice, it is important to check on policy limits for payment. While hospice can be considered an all-inclusive treatment in terms of payment (hospice programs cover almost all expenses) insurance coverage for hospice can vary. Some hospice programs offer subsidized care for the economically disadvantaged, or for patients not covered under their own insurance. Many hospice programs are covered under Medicare. 25 Treatment Most hospice programs concentrate on comfort rather than aggressive disease abatement. By electing to forego extensive life-prolonging treatment, hospice patients can concentrate on getting the most out of the time they have left, without some of the negative side-effects that life prolonging treatments can have. Most hospice patients can achieve a level of comfort that allows them to concentrate on the emotional and practical issues of dying. 16 Relationship Between Hospice and Palliative Care The advancement of the field of hospice care and the emergence and growth of nonhospice palliative care have at the same time unified the specialty and caused tensions. Tensions continue to exist within the field itself regarding how to define the specialty. The issues are complex and are based in part on historical events, barriers to needed palliative care for nonterminal patients and their families, and shifting priorities in healthcare. The challenge is for the field to unite to achieve the best possible outcomes. To do so will require reflection about the past and nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 19

20 considerations for the future of the field in the current health reform environment. 27 As the relationship between hospice and palliative care has developed, perceptions have influenced responses in discussions between patients, families, and colleagues, attempts to educate referral sources and administrators regarding earlier access to needed services, and recent policymakers' responses to language put forth in legislative bills. The unfortunate panel response to the portion of the legislation on death that included counseling on advanced directives, living wills, and EOL care resulted in removal of these provisions from the final bill. Misperceptions regarding the scope of palliative care services have persisted and remain a barrier to accessing needed services. 28 Part of the difficulty with misperceptions appears to be related to confusion of commonly used terminology. For example, what does "comfort care" really mean? In reality, it may mean different things to different people. If a family agrees to comfort care, have they agreed to a do-not-resuscitate status? A descriptive phrase may be more effective at describing what some of the commonly used terms are meant to imply. While these efforts could become cumbersome, it is important that communities become more aware of how it is being perceived and seek ways to improve how medical clinicians communicate hospice and palliative care more effectively. The challenge is to be mindful of the language and phrases to which clinicians have become accustomed. 29 The ultimate goal between both programs is to have palliative care and hospice care fully integrated into the healthcare system. As health reform unfolds, it is critically important that hospice and palliative care clinicians are able to articulate the field's potential to impact key reform initiatives. Access to hospice and palliative care services vary significantly across the United States. Smaller, for-profit, safety net, and Southern hospitals are less likely to nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 20

21 offer palliative services. Hospital palliative care programs also show significant variation in team makeup and support. Studies have also revealed disparities in access to hospice and palliative services among minority populations. Therefore, priorities should include adherence to national guidelines and preferred practices in order to utilize available tools to help establish quality hospice and palliative care programs that reflect the field's standards. Much progress has been made in identifying the core structure and processes for high-quality hospice and palliative care and development of standards to promote their use. 30 Despite nearly a doubling in palliative care programs and increases in hospice programs and individuals served, today there is approximately one palliative trained physician for every 1200 patients with a serious illness. The workforce shortage is expected to increase in the coming years to meet the needs of anticipated shifts in demographics that estimate a doubling of the population older than 65 years and those coping with serious illness. In order to respond to the increasing need for care, there will also need to be an adequate number of trained, credentialed, and certified hospice and palliative care clinicians as well as increasing primary palliative care skills for all health clinicians. 31 Funding for research in hospice and palliative care is one of the highest priorities. The National Institutes of Health (NIH) extramural funding for palliative carerelated research is less than 0.01% despite Senate Appropriations Committee support for emphasis on palliative care research at NIH. Refining quality measures and transparency as well as continued contribution to the growing evidence base for the specialty is needed. Hospice and palliative medical clinicians and leadership organizations have outlined specific research priorities, and tools are available to utilize metrics that assist in data collection and analysis. 32 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 21

22 Recipients Of Palliative Care Adult care recipients vary greatly in their caregiving needs, according to the National Alliance for Caregiving. Most care recipients, between the ages of 18 to 49, are people limited by a long-term physical condition (54%), an emotional or mental health problem (46%), a short-term physical condition (35%), or a behavioral issue (31%). Caregivers of adults age 50 and older report that the person they help needs care because of long-term physical conditions (76%), a short-term physical condition (36%) or emotional/mental health issues (25%). 33 The amount of time spent caring increases substantially as cognitive impairment worsens. Among people 70 years of age and older, those with no dementia receive an average of 4.6 hours per week of care, while those with mild dementia receive 13.1 hours of care weekly. For those with severe dementia, hours of informal care received rises to 46.1 hours per week. Care recipients with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) move in and out of their need for extensive care over a long period of time. Unfortunately, the disease itself, and those experiencing it, are often feared and mistreated by those whose care they depend upon as well as by certain aspects of society at large. In addition, treatment, especially medication, can be extremely costly. In one study of informal HIV/AIDS caregivers, the number of hours committed to caregiving was a mean of hours/week with a median of 15 hours. A high number of instrumental activities of daily living were performed for each care receiver, and over half of the care recipients 56.8 percent received assistance with at least one activity of daily living (ADL). 34,35 The burden of care on the family has been documented, leading to conflicting emotions and fatigue for the caregiver. Overall, patients with a diagnosis other than cancer are more likely to be cared for by relatives with much of the time nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 22

23 given to care being unpaid and unsupported and, therefore, may affect the wellbeing of the caregivers. Indeed, research found that caregivers are often very vulnerable. Older people want to die at home, however, families are often unprepared for the intensity of caregiving. Of particular note is the burden on the family in caring for those with dementia and heart failure. This is supported by research that identified heart failure affected all aspects of the patient s and caregiver s lives, reducing social interaction and leading to isolation. In addition, only 1% of hospice inpatients primary diagnosis has been found to be dementia and it is now recommended that care of patients with dementia should be merged with elements of palliative care to provide person-centered care. Thus, support is provided for the patient in their EOL experience and those caring for them. Full involvement in decision-making and knowledge of disease impact and progression should be sought. 36 Knowledge and understanding of disease and prognosis are other areas that necessitate attention for older people requiring palliative care. Those individuals with heart failure, and their families, report uncoordinated care and lack of open communication between professionals that hinder care management. Indeed, lack of professional input is highlighted in current research, coupled with confusion regarding diagnosis. However, this is a common theme in care of the older person with patients asking for more information and to be involved in decision-making. 18 Ageism in Palliative Care Many older people are marginalized and do not receive information about the full range of services or options available. The term a Cinderella service has been coined with older people being discriminated on the grounds of age. There are numerous examples of ageism in health care, some of which are cited by Help the Aged. Ageism, consequently, is highlighted in the National Service framework for the Older Person standards on person-centered care and discrimination. 37 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 23

24 Symptom Management Symptom management (shortness of breath, pain, depression, confusion, constipation, malnutrition, fatigue and generalized weakness) and common problems in old age (risk of falls and reduced mobility, confusion, skin integrity, continence issues, visual and hearing impairments, poly pharmacy) are important needs to be addressed and should be an integral part of any assessment. The single assessment process documentation for the older person addresses a range of these issues, however, this is not widely used. Patients in old age are more likely than patients with a non-cancer diagnosis to experience pain, nausea and vomiting, a dry mouth, loss of appetite, difficulty swallowing, and pressure ulcers. Those with a non-cancer diagnosis tend to experience fewer distressing symptoms but these are longer-lasting and poorly controlled and will require help or support for longer periods of time. Older people with dementia, however, tend to receive suboptimal EOL care with inadequate management of symptoms, common themes include poor or no pain control, and poorly managed behavioral and psychological symptoms, including hallucinations, depression, agitation and paranoia. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in EOL care for people with dementia; indeed, 67% of patients with dementia were hospitalized in their last year of life. 5,38 Medication Management and Pain Control Older people are more prone to adverse drug reactions and have poorer pain management. Approximately a fifth of older people find pain bad enough to limit daily activities, however, older people generally under-report pain, therefore it goes untreated. Furthermore, those with dementia are at risk of receiving no pain management strategies due to underestimation by healthcare staff, and clients communication problems. However, this underestimation of pain by healthcare nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 24

25 professionals occurs across the spectrum of care of the older person. Research suggests that pain management is an area that palliative care services could promote for the older person, adding that expertise in pain control by palliative care teams would help resolve unrelieved pain symptoms that the older person experiences. 39 End of Life Care An aspect that does need consideration is the client s preference for where care is delivered and where death occurs. Currently, older people, mostly over 65 years, die in acute settings (59%) or long-term care facilities (19%), and only 4% die in a hospice care setting and 16% die at home. However, 75% of older people generally would prefer to be cared for and die at home. Therefore, it could be suggested that EOL care needs of older people are not adequately addressed. Sociologically, older people are more likely to live alone, experience economic hardship, and be lonely and isolated. The psychological impact of a chronic disease also needs attention. Relatives in receipt of specialist palliative care services report fewer psychological symptoms and unmet needs, however, as already discussed, the majority of older people are not cared for in this environment. Older people will also have a heightened awareness that death is drawing closer, and may fear for the future. Common concerns include safety, being able to die with dignity, not dying alone and being prepared for death. For these reasons, holistic care of the older person should be promoted in end of life care. Other aspects include spiritual and psychosocial support, the use of complementary therapies, and to have physical needs addressed including pain and symptom control. Additionally, there are aspects relating to privacy and dignity, support of the family and caregivers, access to specialist palliative care teams and/or noncancer patient teams, time to say goodbye and, finally, bereavement support. 40,41 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 25

26 Children in Palliative Care The provision of palliative care for children involves a partnership between the child, family, parents' employer(s), teachers, school staff, and health professionals, including nurses, chaplains, bereavement counselors, social workers, primary care physicians, subspecialty physicians, and consultants. Physical, emotional, psychosocial, and spiritual/existential domains of distress must be addressed. The child should participate to the fullest extent possible, given his or her illness experience, developmental capacities, and level of consciousness. Regardless of the prognosis, respect for the child requires that he or she be given a developmentally appropriate description of the condition along with the expected burdens and benefits of available management options, while soliciting and listening to the child's preferences. For example, burdens may include time away from home and friends; and, benefits may include participation in research studies based on an altruistic motive. The discussion should focus on what interventions, from the child's and family's perspective, will be of the most benefit. 37,42,43 Each available diagnostic or therapeutic intervention needs to be considered within the context of the goals and expectations of the child and family. The decision to forgo certain treatments means that only those selected interventions are withheld or withdrawn. As the goals of therapy change with the progression of the child's condition or disease, the desirability of some interventions may change. Early interdisciplinary discussion and planning facilitates the smooth integration of these changes. The relief of pain and anxiety is an essential aspect of palliative care, and should be addressed throughout the course of illness. In some instances, pain relief may free a child to participate more fully in his or her final days, weeks, or months of life. Openness to the day-to-day experience of the child and flexibility in nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 26

27 considering all options that may palliate distressing symptoms and conditions are essential when developing a treatment plan. 26 Minimum standards of pediatric palliative care must include a mechanism to ensure a seamless transition between settings, including at least one consistent caregiver, the availability of expert pediatric palliative care assistance 24 hours a day, 365 days a year, and the availability of an interdisciplinary care team with sufficient expertise to address the physical, psychosocial, emotional, and spiritual needs of the child and family. At the minimum, this team will include a physician, nurse, social worker, spiritual advisor, and child life therapist. 44 Although palliative care services may not be necessary for all families, the full range of clinical and educational resources must be made available. In addition, comprehensive palliative care cannot be accomplished without a designated care coordinator who can maintain continuity and ensure the care provided is consistent with the child's and family's goals despite the intermittent care and high staff turnover associated with tertiary care centers. The coordinator can ensure that the plan of care is coordinated with community care professionals to ensure a realistically achievable plan. Tertiary centers must provide community caregivers with explicit instruction in the care of the child, and appropriate pediatric palliative care consultation must be available 24 hours a day. Creative ways of coordinating care between the tertiary center and the community may involve individualized video conferencing or other forms of electronic communication. Respite for family caregivers and home nursing care are essential to maintain the integrity of families and the safety and wellbeing of the ill child. Finally, bereavement support must be available to the family, caregivers, and others affected by the death of a child, for as long as necessary. 45,46 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 27