Palliative Care and Pain Management at the End of Life ___________________________________________
lung cancer, 47% had not discussed hospice within four to seven months after diagnosis [153]. Discussions are particu- larly lacking among people with nonmalignant life-limiting diseases, with 66% to more than 90% of patients or clinicians reporting that they had not discussed end-of-life issues [62; 126; 154; 155]. Even among clinicians who discuss end-of-life care with their patients, the timing is not optimal. Approximately 24% of physicians have noted that they provide hospice information at the time of diagnosis, the point at which this discussion is recommended [128; 156]. In a national survey of clinicians caring for people with cancer, most respondents said they would wait until treatment options had been exhausted or symptoms had occurred before discussing end-of-life issues, and many said they would have the discussion only if the patient or family raised the issue [157]. Patients and clinicians should talk about end-of-life issues early to avoid discussing the topic during the stress of exacerbated disease or imminent death. The topic can then be framed as a component of care for all patients with a life-limiting ill- ness [62; 117]. According to published guidelines and expert recommendations, end-of-life issues should be discussed when the clinician would not be surprised if the patient died within six months to one year [6; 117; 148]. As other mark- ers, an end-of-life discussion is generally recommended in the presence of moderate or severe COPD, during evaluation for liver transplantation, and in the presence of stage 4 or 5 chronic kidney disease or end-stage renal disease [62; 121; 123]. The 2009 ACCF/AHA guideline for the diagnosis and management of heart failure noted that end-of-life care options should be discussed when “severe symptoms in patients with refractory end-stage heart failure persist despite application of all recommended therapies;” the 2013 guideline for the man- agement of heart failure is less clear about the timing of such a discussion [158; 159]. The ACCP recommends discussing end-of-life care options when caring for patients with advanced lung cancer [54]. Other indications that should prompt a conversation about end-of-life care are a discussion of prognosis or of a treat- ment option with a low likelihood of success, a change in the patient’s condition, patient and/or family requests or expecta- tions that are inconsistent with the clinician’s judgment, recent hospitalizations, and patient and/or family questions about hospice or palliative care [117; 148]. Several patient-related and clinician-related factors contribute to the low rate of end-of-life discussions or their untimeliness. Most patients will not raise the issue for many reasons: they believe the physician should raise the topic without prompting, they do not want to take up clinical time with the conversa- tion, they prefer to focus on living rather than death, and they are uncertain about continuity of care and fear abandonment [62; 117; 148; 150]. Clinician-related factors include [81; 147; 148; 160; 161]:
The Institute for Clinical Systems Improvement recommends that palliative care discussion or referral should be considered whenever a patient develops or presents with a serious or life-threatening illness, in all care settings.
(https://www.icsi.org/wp-content/uploads/2021/11/ PalliativeCare_6th-Ed_2020_v2.pdf. Last accessed October 14, 2024.) Level of Evidence/Strength of Recommendation : Low- Quality Evidence, Strong Recommendation
Although the topic is emotionally and intellectually overwhelm- ing for patients and families, they want information. In a systematic review (46 studies), Parker et al. found that patients with advanced life-limiting illnesses and their families have a high level of information needs at all stages of disease [149]. That study and others have shown that the end-of-life issues of most importance to patients are [62; 149]: • Disease process • Prognosis for survival for quality of life • Likely symptoms and how they will be managed • Treatment options and how they will affect quality and duration of life
• What dying might be like • Advance care planning
Most patients want some discussion of end-of-life issues (includ- ing hospice care) at the time a life-limiting illness is diagnosed or shortly thereafter [62; 149]. Although many physicians say they avoid discussing end-of-life issues because they are afraid the conversation will destroy the patient’s hope, the discussion actually offers many benefits: it makes patients fully informed and thus better able to make decisions about treatment options and care goals; provides patients with an opportunity to achieve closure on life and family issues; allows patients to handle practical matters; and enables patients to carry out advance care planning [35; 81; 148; 150]. As such, the discussion empowers patients, giving them a sense of control over choices [148; 150]. Patients who discuss end-of-life issues and goals of care with their clinician also are more likely to receive care that is consistent with their preferences, to enroll in hospice, to complete advance direc- tives, and are less likely to be intubated or to die in an intensive care unit [151; 152]. Despite these benefits, studies have consistently shown that few clinicians and patients discuss end-of-life issues or discuss them in a timely manner. Overall, about 25% to 33% of physicians have noted that they did not discuss hospice or end-of-life care with their patients who have life-limiting diseases [128]. In a multiregional study of more than 1,500 people with stage IV
18
MDCA1525
Powered by FlippingBook