Palliative Care

Introduction

To achieve our full potential as a society, we must strive to keep people as “healthy” as possible (i.e., as defined by the World Health Organization: “a state of complete physical, mental, and social well-being and not merely the absence of disease). The last 70 years of healthcare have been focused on longevity and increasing lifespan. The average life expectancy in North America and much of Western Europe has indeed increased by 20 years over just the last seven decades. Today, while a few people die acutely, over 90% of us live for months to years with one or more chronic, potentially life-threatening diseases. Along with the success of controlling disease and increasing longevity has come this new reality of chronic illness, particularly as people approach the end of their lives. Patients and families must now cope with one or more potentially devastating diagnoses. They must then adapt to live with the multiple issues that arise from the sequelae of chronic disease. These issues can cause suffering that lasts for months to years. Families often have the daunting task of caregiving for years, which ultimately ends with the death of a loved one, and the stress of which may continue with the family for years. There are struggles to cope with multiple changes, including the burden of increasing dependence, while trying to have as many meaningful and valuable experiences as possible. To achieve the goal of “health,” healthcare must now address the multiple issues people face during a chronic illness. In doing so, it must address the whole person—body, mind, and soul—utilizing a patient- and family-centered approach.

Palliative care

Palliative care is the newest body of knowledge and skill in healthcare and is focused on caring for those with chronic, advancing, and serious illnesses, along with helping their families. It includes a wide range of therapeutic interventions that aim to prevent and relieve suffering caused by the multiple issues patients, families, and caregivers face, and the needs these create, at any stage during an acute or chronic serious illness (Figure 1). The concept of palliative care was first introduced in Canada in the mid 1970s. It derives from the Latin verb palliare, which means to cloak, to comfort, and grew out of, and includes, hospice care—specialized care for patients and families near the end of the patient’s life. Palliative care is specialized medical care for people with serious illness, the goal of which is to improve quality of life for both the patient and their family (1, 2). The focus of palliative care is on providing relief from pain, other physical symptoms, and psychosocial distress, whatever the underlying diagnoses. It is provided by a team of doctors, nurses, social workers, spiritual counselors, and other specialists, all of whom work with a patient’s other doctors to provide an extra layer of care. Palliative care is appropriate at any age and any stage of a serious illness, including dementia, and it may be provided concurrently with curative treatment (1, 2). When curative treatment is no longer an option, or no longer opted for, palliative care may become the sole focus of care. Hospices provide this type of focused, enhanced, palliative care to patients and families when cure is no longer being pursued and prognoses are short. Hospice care includes interventions to help patients and families close their lives together, manage the last hours of life, and provide bereavement care for family who survive the patient’s death, all as part of the palliative care package they provide (Figure 2) (1, 3).

While some physicians provide primary (basic) and secondary (advanced) palliative care, most are not yet comfortable with this new knowledge and skill set. Similar to other medical specialties, interdisciplinary services specializing in palliative care provide tertiary (expert) consultative services to manage challenging and complex situations, particularly when goals of care shift to focus more on comfort and quality than cure. Today, palliative care consultation is increasingly available in acute and long-term care facilities, in ambulatory outpatient settings, and in patients’ homes. Specialized palliative care and hospice inpatient units and free-standing facilities also have become available to care for patients with complex issues, and when goals of care shift to focus solely on palliative care and/or the patient can no longer be cared for adequately at home.

The evidence for palliative care

In an initial study of hospice care, detailed cost and patient outcome data were assembled on 1,754 palliative care and standard care patients selected by predetermined criteria from a population of over 12,000 advanced cancer patients identified in 40 hospice programs and 14 conventional oncological care settings from October 1980 through March 1983. The principle findings were that the cost of palliative care was less than for standard care. However, for patients with long lengths of stay in the palliative care programs, the cost exceeded conventional care costs. Conventional care costs escalated in the last month of life more rapidly than for patients enrolled in palliative care. Palliative care patients were more likely to be prescribed analgesics on an around-the clock basis, have medications for other symptoms prescribed, and have more psychosocial interventions than standard care patients. Interestingly, no differences were found in overall quality of life or in patient-reported satisfaction with care (4).

A national study evaluating a representative sample of all deaths in the United States in 2004 found, unequivocally, that palliative care achieves far better clinical outcomes than standard care (5). The outcomes for those receiving palliative care through a hospice program were much better than for those cared for in hospitals, nursing homes, or at home by standard home health agencies. More than 1/3 of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and family. Family members of patients receiving palliative care were more satisfied with overall quality of care, amount of symptom control, amount of respect, and access to physicians than those of patients dying in any other setting.

Palliative care administered by a hospice program is less expensive than standard care at the end of life when matched by diagnosis and severity of illness (6, 7). When palliative care is delivered by a specialist consultation team in combination with standard care in a hospital, it also results in cost savings (8).

Significantly, the concern has been raised that hospice and palliative care results in reduced costs because the patients served die sooner or receive less care than patients receiving standard care. In 2010, a well-designed randomized study in patients with lung cancer demonstrated that not only does palliative care not shorten life, it is associated with longer survival and the patients felt better (9). This study’s surprising finding about longevity is strengthened by three other single institution demonstration projects with similar designs. When palliative care was combined with standard care for lung cancer, there were improved quality-of-life findings (10). In another study, patients with advanced cancer of any type were randomly assigned to standard care or standard care plus palliative care given by a certified hospice program. There was also an increase in survival associated with palliative care (227 days in the standard care arm versus 266 days in the combined standard care plus palliative care arm) (11). In another randomized study of standard care versus standard care plus palliative care, there was a survival difference of 8.5 months in the standard care arm versus 14 months in the standard care plus palliative care arm (12).

In summary, palliative and hospice care are associated with better patient and family outcomes, improved patient and family satisfaction, decreased healthcare costs, better service delivery, and similar if not increased survival.

Role for psychiatry in palliative care

There is much overlap between psychiatry and palliative care. In both, the aims are often to improve function and quality of life, manage symptoms, focus on psychosocial aspects of care, and coordinate among the myriad care providers that our patients often have. Of the over 1.5 million people that received hospice care, 83% were over aged 65 and 11% had dementia (4). Depressive symptoms are likely in 50% of patients receiving palliative care, about 70% will have symptoms of anxiety, and nearly 100% will suffer from delirium at one point in their care (13). Existential, psychological, and family issues are also common themes. Most of these are often diagnostic considerations, and differentiating among psychiatric disorders, or disorders from symptoms and normal feelings can be challenging (13). The integration of psychiatrists into interdisciplinary palliative care teams will lead to the best results for patients and families. In the consultative role, psychiatrists will be in the position to educate physicians and other members of the palliative care team about the complexities of psychiatric care in this patient population and how to best utilize the psychiatrist’s expertise.

Palliative care and dementia

Geriatricians and geriatric psychiatrists often are involved with caring for people with dementia (and their families). Dementia is a terminal illness and the advanced stages are plagued with complications that portend short prognosis, yet these patients often receive unnecessarily aggressive care (14). Nursing home residents with advanced dementia who received hospice care have fewer aggressive treatments, fewer unmet needs, better treatment of pain and dyspnea, and lower odds of dying in a hospital (15–17). Hospice care has also been shown to improve family perceptions of quality of care and quality of dying (18). Increased and earlier access of patients with dementia is critical for proper care and may also yield cost savings to the healthcare system. This may apply to broader geriatrics issues and nursing home care in general.

Conclusion

Patients and families living with life-threatening illness often have multiple, complex, and interrelated problems that emerge as part of their underlying disease processes. These issues impact their sense of personhood, diminish their sense of well-being, and impair their ability to realize their full potential.

While physicians can all develop core competencies for providing palliative care, when the situation and potential treatments are complex, and the risk of medication interactions and/or adverse events high, the healthcare team will benefit greatly from consultation and support from experienced palliative care consultants or experts.

What better role for psychiatrists to play than to help people 1) address their needs for physical comfort, safety, love, and esteem and 2) realize their full potential? Within the context of palliative care, this means helping patients and families maintain their dignity, while achieving as much comfort and peace of mind as possible. Such an approach will enable families to cope as optimally as possible during this stressful period and avoid the likelihood of a protracted or complicated bereavement. It will also help families move into the next phase of their lives, with memories of the deceased less tainted by the experience of illness and how the life of their loved one ended. Palliative care, along with the standard care provided, will improve your patient outcomes, patient and family satisfaction, quality of life, and longevity, all while reducing healthcare costs. Got Palliative Care?