___________________________________________ Palliative Care and Pain Management at the End of Life
When the patient, family, and/or healthcare team do not agree on the benefit/utility of interventions, the clinician should consider consulting with social workers or pastoral care services to help with conflict resolution [187]. In addition, the clinician should explain to patients that the likelihood of insurance coverage for a treatment is low if it is not medically indicated [188]. Clinical guidelines have begun to address the use of aggressive treatment at the end of life. The ACCF/AHA guideline on the management of heart failure notes that it is not appropriate to carry out aggressive procedures in the last several months of life if they do not contribute to recovery or improve quality of life (including intubation and implantation of a cardiac defibril- lator) [108]. In addition, discussion of device deactivation for patients with refractory heart failure is recommended [159]. The Renal Physicians Association recommends forgoing dialy- sis for patients with chronic kidney disease or end-stage renal disease who have “very poor prognosis” [121]. The increased use of chemotherapy near the end of life has led oncology experts to recommend more judicious use of chemotherapy. Oncologists have called for the discontinuation of chemo- therapy when the chance of success is minimal, such as when disease progresses after three consecutive regimens [178; 192]. Early discussion of preferences for life-sustaining measures is especially important. It is estimated that roughly 75% of patients will be unable to participate in some or all of the decisions pertaining to their care at the end of life [193; 194]. Documentation of preferences helps to inform decision making by the physician and the patient’s health care proxy (surrogate decision maker). Clinicians should encourage their patients to designate a healthcare proxy early in the course of a life-limiting disease [62; 82; 122]. Patients should be urged to clarify their wishes with their chosen health proxy, as a proxy often inac- curately predicts a patient’s wishes or may have values that conflict with those of the patient [194]. Advance directives, designation of a healthcare proxy, do-not- resuscitate (DNR) orders, and living wills were developed as a way to ensure that patients received care that was consistent with their preferences and goals. Advance directives offer many benefits; they have been associated with a lower likeli- hood of in-hospital deaths, an increased use of hospice, and a significant reduction in costs [195]. Although early studies showed that advance directives did not always translate into patients receiving their preferred level of care, later studies have demonstrated that most patients with advance directives do receive care consistent with their preferences, especially if they want limited care (rather than “all possible” care) [194; 196]. The American College of Physicians recommends that clini- cians ensure that patients with “serious illness” engage in advance care planning, including the completion of advance directives [47]. Clinicians must emphasize the value of advance directives because most patients have not completed them. An estimated 20% of the population have written advance directives, with higher rates among the older population and nursing home residents and lower rates among minority
populations and those with nonmalignant life-limiting diseases (compared with people with cancer) [197; 198; 199; 200; 201]. Other guidelines recommend that advance care planning be done early in the course of disease, to help avoid potential compromise of decision-making capacity near the end of life [62; 108; 121; 122]. In preparing for a discussion about advance directives, clini- cians should ask the patient if he or she wishes to have other family members present during the conversation. This is espe- cially important for patients of some cultural backgrounds, as healthcare decisions are the responsibility of family members in many cultures [200]. Increased efforts should be aimed at obtaining advance directives from patients of minority races/ ethnicities. Although the rate of advance directives is higher in the gay and lesbian community than in the general population, clinicians should emphasize the importance of these docu- ments to gay and lesbian patients to ensure that the patient’s wishes are carried out and to avoid legal consequences for the patient’s partner [202]. DNR orders and living wills have limitations and have been open to interpretation, which has led to the development of medical order forms based on patients’ preferences. Developed at the Oregon Health & Science University, the Physicians Orders for Life-Sustaining Treatment (POLST) program is designed to ensure that a patient’s preferences regarding cardiopulmonary resuscitation, scope of treatment, artificial nutrition by tube, and use of antibiotics (in some states) can be followed, regardless of where the patient receives care [203]. Nearly all states have an endorsed POLST program or one in development [203]. A POLST does not replace a traditional advance directive, and when available, an advance directive should accompany the POLST form [203]. Early studies have demonstrated that the use of POLST has led to higher rates of meeting patients’ preferences [204; 205]. Legal issues related to advance directives and POLSTs vary according to state, and clinicians should be familiar with the law in the state in which they practice [197]. GUIDELINES FOR PALLIATIVE CARE The NCP consortium published an update of its Clinical Practice Guidelines for Quality Palliative Care in 2018, a copy of which is available online [6]. The guidelines are applicable for both specialty and primary palliative care and are organized in reference to the same eight domains used in past editions. New themes emphasized in each domain include comprehen- sive assessment, family caregiver support and education, care coordination, and culturally inclusive care [6]. The ICSI also provides guidelines for palliative care, including an algorithm for overall care, with details on the management of several specific symptoms [113]. Other general guidelines for palliative care have been developed by the International Association for Hospice and Palliative Care, now in its third edition [206]. Despite these resources, there is limited guidance on the treat- ment of specific symptoms in disease settings other than cancer. As a way to heighten awareness of the need for improved pallia-
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