Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services.
The current model of medical care in the United States is unable to meet the needs of many patients with advanced illness. Consequently, both the quality and costs2,3 of health care, particularly for people with advanced illness4 are central issues in the debate over health care reform.5 Patients with cancer make up a significant portion of those people who have a high symptom burden and/or with advanced illness.
Patients assigned to the PC intervention had significantly higher QOL scores compared with patients receiving standard oncology care alone (P = .03). Temel et al6 also demonstrated that the palliative intervention group had fewer depressive symptoms (P = .01) as well as less aggressive EOL care (P = .05). Average hospice stay in the PC intervention group was 11 days versus 4 days in the standard oncology care group (P = .09). Despite less aggressive EOL care, patients in the PC intervention group survived 2.7 months longer than those receiving standard oncology care alone (P = .02).6 The patients who had concurrent care understood their ultimate prognosis and incurability more clearly as time went on, and those who understood their prognosis received less chemotherapy near the EOL (9% v 50%; P = .02), which may account for the longer survival.11 The authors concluded that early PC in patients with metastatic NSCLC significantly improves QOL, mood, and survival despite less aggressive EOL care compared with standard oncology care alone
Meyers et al15 randomly assigned 476 patients and caregiver dyads undergoing phase I, II, or III cancer treatment at three cancer centers to usual care or usual care plus Creativity, Optimism, Planning and Expert Information (COPE), a simultaneous care educational intervention. The primary end point of the trial was global QOL measured with the City of Hope QOL Instruments for Patients or Caregivers; a secondary end point was problem-solving abilities. The intervention included educational sessions by trained educators with the patient and caregiver; these sessions included the COPE problem-solving model and began by addressing one problem. Each dyad received The Home Care Guide for Cancer. There was no difference in the rate of change of QOL between the usual care and intervention groups. Caregiver QOL scores also declined but at a lesser rate in the intervention group, which was a statistically significant difference (P = .02). In planned secondary analyses, the caregivers in the simultaneous care educational intervention group had significantly less decline in the psychological, social, and spiritual QOL scores. The impact of COPE increased over time. The COPE intervention allowed the caregiver to maintain stable QOL over time.
To the public, and to patients and their families, the benefit of this added layer of support from a team focused on quality of life and clear and accurate information in support of shared patient and family decisions, is obvious. The likelihood that a better quality of life helps people live longer is also unsurprising to public audiences; it is physicians that seem to have trouble with the concept of attending to quality of life and control at the same time as life-prolonging treatments. My colleagues struggle with the explanation: How, exactly, could a better quality of life result in a longer life?
Why this persistent failure to recommend palliative care to newly diagnosed cancer patients? Unlike the public, more than 75 percent of whom have no idea what palliative care is and are, therefore not biased against it, physicians hold onto an incorrect and outdated understanding, often conflating palliative care with hospice.
First, we can make sure the public knows what palliative care is and encourage them to ask their doctors for it under appropriate circumstances. Media coverage of studies demonstrating gain in both quality and quantity of life in association with palliative care have begun to change patient and family behavior in precisely this direction, as our hospital consultation service receives a growing number of requests that were initiated not by the doctor, but by the patient or family member
6 components of a good death. These six components are" (1) proper pain and symptom
management, (2) clear decision making. (3) nreparation for death, (4) completion. (5) an ability to contribute to others, and (6) affirmation of the whole person.
As noted previously, a good death must start wiln effective treatment of pain and capable symptom management. Fears of a horrific death and loss of bodily control can
often be alleviated with proper treatment. Patien; anxiety cen be reduced and patient trust in the treatment team and communications with family and healthcare providers can be increased (Bosek et al, 2003). If pain and other physical symptoms are managed properly, psychosocial, existential and spiritual issues may be focused on &nd; there is a higher probability that the individual will address these end-of-hfe issues (Kaut. 2006; Singer et al. 1999: Steinhauscr et. al, 2000a)
Psychosocial adjustment that raises patient quality of life is also dependent on the relief of burdens and the strengthening of important relationships prior to death (Singer et al. 1999). Patients often have gteat concern thai they are being a burden to their family and their caregivers (Steinhauser ct al. 2000a). Improving communication between patient and family and patient and healthcare professionals could do much to relieve the burden that terminal illness may bring and strengthen the relationships that arc necessary to raise the level of quality of life at the end of life. Raising quality of 11% and quality of death maximizes the patient's opportunity to experience a good death.
Patients, family, and other loved ones; medical and nursing staff; pastoral caregivers; and other supportive caregivers all have an interest in ensuring high-quality end-of-life care. Of all these groups, it is the patient who should have the most input into the decision-making process. This is often not possible in the ICU, where sudden events may have taken place before a patient's wishes were clearly known. Singer and colleagues identified 5 factors that patients felt were important:
Avoidance of a prolonged dying process;
Return of control and authority;
Relieving burden; and
Strengthening links with loved ones.
Discrepancies between the positive experiences of patients and family caregivers with opioids and the reluctance of physicians to prescribe opioids for refractory dyspnea constitute an important gap in care. Bridging this gap will require initiatives to improve the uptake of practice guidelines and to increase confidence in prescribing opioids for dyspnea refractory to conventional treatment.
We have previously described the burdens that advanced COPD imposes on relationships between spouses and/or between patients and their children.24,26 In the current study, we again heard repeated descriptions of guilt (e.g., if caregivers left patients on their own for any length of time). We also heard of resilience and a determination to “see things through” (Box 3). When exploring with patients and family caregivers whether or how opioids (for dyspnea) had changed their relationships, some caregivers described how the patients’ use of opioids had imposed a new routine, depending on the medication used and the setting, and that it did so within a sense of teamwork. We also heard concern that stopping morphine would shorten life
However, the aim of this study was not to determine the best approach or to quantify how much is done at the end of life. Rather the authors wanted to explore a simple question that has not so far been examined in depth: what is the range of nonpharmacological care used by caregivers in the last days of life?
The results are complex, because the described activities often encompassed a wide range of purposes and intentions. However, an underlying theme is that efforts are made by palliative care staff to personalize care and support links with a dying individual's everyday life.
There was also an emphasis by care staff on creating a pleasing environment for a patient. Small acts such as keeping a patient's slippers by their bed even though they are unable to walk demonstrate the subtle ways in which caregivers provide comfort by maintaining a connection with a patient's life.
Unfortunately, portrayals of care for the dying in the media can be dominated by anecdote, often negative , and other emotive issues, such as assisted dying . However, the findings from this study should be considered a positive news story. They reveal the complex and sometimes subtle caregiving approaches that palliative care staff take to improve the experience of dying for both patient and family. The findings also reaffirm definitions of palliative care, which state that the scope of palliative care is not wholly centered on relief of pain and suffering but also extends to psychosocial and spiritual care . Research such as this not only provides hope that it is possible to have a good quality of death but also suggests that through research the experience of dying can be improved.
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or 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 patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counselling, 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, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
In the cancer world, the term “survivor” is as ubiquitous as it is hard to define. Some cancer patients I’ve talked to feel that it’s too much territory to cover for a single word — every cancer patient has a different diagnosis, a different prognosis.
“I loathe the term,” a Twitter acquaintance wrote to me. It’s either exclusionary or overly broad. So I don’t define it, I avoid it.”
Understanding the need to build a coalition that could give voice and direction to end-of-life care issues and bring the lay public into the fold, RWJF made three crucial grants to create:
Last Acts®. Began in 1995 and one of the largest projects in the group, the program became a resource and organizing force for advocates seeking to build far-reaching awareness on the issues.
Promoting Excellence in End-of-Life Care followed in 1996. Program head Ira Byock, MD, an emergency room physician, was a fervent believer in the need to help his fellow physicians make peace with the difficult concept of giving care, even if a cure was not an option.