HEALTH REFORM AND PALLIATIVE CARE: 2017 UPDATE

enough. Palliative care also encompasses care provided through the later stagesof serious illness and dying. In the later stages of serious illness, palliative careincludes end of life (EOL) care, which might involve referral to a formal hospiceprogram as well as support of the family through the bereavement period.Hospice refers to an aspect of palliative care devoted to alleviating symptoms andenhancing quality of life during the last six months of life for patients who acceptthat disease-directed therapy can no longer benefit them.3,4Palliative care is a comprehensive approach to improve the quality of life forpeople who are living with serious or potentially life-limiting illnesses. Palliativecare programs are made up of a multidisciplinary team of physicians, nurses,therapists, counselors, and social workers. The entire team works in collaborationtogether 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 seriousillness. Since no two patients are alike, palliative care treatments are tailored tothe individual based on his or her medical needs and wishes for how they want tobe treated – physically, psychologically, and spiritually.Palliative care is a resource available for anyone with a serious or life-limitingillness. Some types of conditions that may be appropriate to receive palliativecare include cancer, congestive heart failure (CHF), chronic obstructivepulmonary disease (COPD), Parkinson’s disease, Alzheimer’s disease, dementia,liver failure or end-stage kidney disease. Palliative care provides treatments forsymptoms even if the underlying disease cannot be cured. The main goals ofpalliative care are to relieve the pain and suffering and discomfort associated withan illness and to reduce patient and family members’ stress. Palliative care canbe provided in a number of healthcare settings including a patient’s home,outpatient palliative care clinics, nursing homes, hospitals, or other specializedclinics.5,6nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com7

As with any new specialty of medicine, hospice and palliative care is not wellunderstood by either the public or the medical profession. This is generally not acomfortable topic, and the role of physicians to treat patients with EOL careneeds is continually evolving. However, good EOL care is something thatmedicine must do. After all, it is often part of the problem. By curing many of theacute ailments, medical clinicians have created chronic disease. The dyingprocess has become more complex, and now takes much longer. People in theU.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 someestimates, the average patient will spend 75% of the healthcare dollars over anentire lifetime during the last thirty months of life. Therefore, medical cliniciansmust treat suffering as well as disease. As suggested, sometimes in treating thedisease, with modern technology, medical clinicians become the source ofsuffering itself. The wise health clinician knows when to transition from cure topalliation.7Palliative care of EOL patients encapsulates all facets of good family medicine. Ifa medical clinician performs family practice well, he or she will do palliative carewell. However, while palliative care can be relatively straightforward, problemscan arise that are beyond the skills of family medicine. Now that palliative carespecialist teams exist there is backup advice and support for most family practiceclinicians. But having specialist teams available in most locations is not a reasonto cede all palliative care to them. Specialist teams cannot meet the demands ofthe number of people who are dying in any given time. It is in everyone’s interestfor family medicine clinicians to be competent and strong collaborators in thisarea of patient care.8The World Health Organization (WHO) defines palliative care as an approach thatimproves the quality of life of patients and their families facing the problemsassociated with life-threatening illness, through the prevention and relief ofsuffering by means of early identification and impeccable assessment andnursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com8

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 untildeath. offers a support system to help the family cope during the patient’s illnessand 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 ofillness. is applicable early in the course of illness, in conjunction with othertherapies that are intended to prolong life, and includes thoseinvestigations needed to better understand and manage distressing clinicalcomplications.The WHO definition of palliative care for children states that it “represents aspecial, albeit closely related field to adult palliative care,” with principles relatedto pediatric chronic disorders. Palliative care for children:9 is the active total care of the child’s body, mind, and spirit, which alsoinvolves giving support to the family. begins when illness is diagnosed, and continues regardless of whether achild receives treatment directed at the disease. requires a broad multidisciplinary approach that includes the family andmakes use of available community resources. can be provided in tertiary care facilities, in community health centers, andeven in children’s homes.nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com9

The above definition reflects the 21st century view that palliative care isapplicable whatever the life-threatening illness, and is the first time that thedefinition does not overtly refer to cancer. Indeed, more hospices and specialistpalliative 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 aspossible, 3) alleviate isolation, anxiety and fear associated with advancingdisease, 4) provide as dignified a death as possible, and 5) support those whoare bereaved.The palliative care movement was born out of the hospice movement andProfessor Mount, a Canadian who worked with Cicely Saunders at St.Christopher’s Hospice in London, first coined the term. Since 1987, palliativemedicine has been recognized as a distinct medical specialty.10 All lifethreatening illnesses – be they cancer, neurological, cardiac or respiratorydisease – have implications for physical, social, psychological and spiritual health,for both the individual and their family. The role of palliative medicine andnursing is therefore to assess needs in each of these areas and to collaborativelyplan, implement and evaluate appropriate interventions aimed at improving thequality of life and to enable a dignified death.With the current growth of palliative care as a specialty, there can be someconfusion 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 ofall clinical practice, whatever the illness or its stage. A knowledge and practice ofpalliative care principles inform such an approach. Palliative intervention, on theother hand, involves disease intervention when the disease is not curable;sometimes known as generic palliative care. Specialist palliative care requires ahigh level of professional skills from trained staff, as well as a high staff topatient ratio. It refers to a service provided by a multi-professional team led bynursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com10

clinicians with recognized specialist palliative care training. The aim is also tosupport patients and their families, wherever they may be, such as in thehospital, home or under the care of hospice.2End-of-life caregiving presents a number of particular challenges, including thenecessity of making life and death decisions about matters such as whether toutilize life-sustaining treatments and hospice care, intense care demands, andwitnessing pain and suffering in loved ones. Decision making at the end-of-lifecan be particularly stressful for families. Family members may be asked whetherto begin tube feeding, institute antibiotic therapy for infections, or to declinemedical procedures that might extend duration of life when the quality of life ispoor.Presence of written advance directives or even a history of verbal discussions ofEOL issues helps families cope. Family stress associated with the decision towithdraw treatment tends to be high immediately following the death of adecedent and, while it decreased over time, remained high half a year later.Research shows, however, that family stress is highest in the absence of advancedirectives; and, stress is lower when verbal advance directives guide the family,and lowest when written advance directives are in place.11Cultural diversity issues can become particularly prominent at the end-of-life aswell, and may affect decision-making. For example, African American older adultsare less likely than others to agree to withhold life-sustaining treatment evenwhen quality of life is poor, and cultural values among many Asian groupsdiscourage direct disclosure to dying patients and instead encourage decisionmaking by family members.12Palliative care u

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