Abstract
The goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. As death approaches, a patient's symptoms may require more aggressive palliation. As comfort measures intensify, so should the support provided to the dying patient's family. After the patient's death, palliative care focuses primarily on bereavement and support of the family.
INTRODUCTION
While dying is a normal part of life, death is often treated as an illness. As a consequence, many people die in hospitals, alone and in pain.1 Palliative care focuses primarily on anticipating, preventing, diagnosing, and treating symptoms experienced by patients with a serious or life-threatening illness and helping patients and their families make medically important decisions. The ultimate goal of palliative care is to improve quality of life for both the patient and the family, regardless of diagnosis. Although palliative care, unlike hospice care, does not depend on prognosis, as the end of life approaches, the role of palliative care intensifies and focuses on aggressive symptom management and psychosocial support.
Helping patients and their families understand the nature of illness and prognosis is a crucial aspect of palliative care near the end of life. Additionally, palliative care specialists help patients and their families to determine appropriate medical care and to align the patient's care goals with those of the healthcare team. Finally, establishing the need for a medical proxy, advance directives, and resuscitation status is an integral part of palliative care at the end of life.
MODELS OF CARE
The traditional medical treatment model has become dichotomous, leading physicians to provide curative or aggressive treatment initially and to initiate comfort care only when other measures have failed. Palliative medicine establishes goals to relieve suffering in all stages of disease and is not limited to comfort care or end-of-life care (Figure2).3
Models of healthcare delivery. (Reproduced with permission from the National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2008.)2
The terms palliative care and hospice care are sometimes used interchangeably. According to the National Quality Forum, hospice care is a service delivery system that provides palliative care/medicine when life expectancy is 6 months or less and when curative or life-prolonging therapy is no longer indicated.4 Therefore, it is important to distinguish that although hospice provides palliative care, palliative care is not hospice. Not all available therapeutic palliative care modalities are provided within the hospice service delivery system.
THE CONCEPT OF TOTAL PAIN
The alleviation of suffering is an essential goal of medical care. To treat it, however, providers must first recognize pain and suffering.5 Saunders first described the concept of total pain (Table 1)6 and interaction among the various sources of pain and suffering.7 Total pain is the sum of the patient's physical, psychological, social, and spiritual pain. This concept is central to the assessment and diagnosis of pain and suffering.
Four Components of Total Pain
Because psychological distress, lack of social support, and physical pain are associated,8 treating a patient's total pain is imperative, especially at the end of life. Optimal pain relief will not be possible unless all the elements of total pain are addressed. Clinicians should utilize other members of the multidisciplinary team, such as social workers and chaplains, to better treat suffering related to the different domains of total pain.
MANAGING COMMON PHYSICAL SYMPTOMS
Patients near the end of life may experience extreme symptoms that include physical, spiritual, and psychosocial suffering. Preventing and managing these symptoms while optimizing the quality of life throughout the dying process is the goal of palliative medicine.9 Factors important to seriously ill patients include adequately controlling pain and other symptoms, avoiding prolongation of the dying process, achieving a sense of self-control, finding meaning in life, and relieving the care burdens of family and loved ones while strengthening and completing those same relationships.10 As death becomes nearer, the symptom burden increases while the patient and family tolerance of physical and emotional stress decreases. At this time, primary palliative care interventions should take precedence, and the focus on restorative care should decrease. The triggers for the shift to palliative care include the following four symptoms.
Physical Pain
Pain is one of the most prevalent symptoms near the end of life. Unrelieved pain can be a source of great distress for patients and families and exacerbate other symptoms. Therefore, the adequate management of pain at the end of life is imperative. Although opioid analgesics are the standard of care for treating moderate to severe pain in patients with advanced illness, the false fear that opioids induce respiratory depression and hasten death is a major barrier to their use at the end of life. However, both effects are uncommon when opioids are given at appropriate doses. Clinicians who care for the chronically ill and for those at the end of life should acquire competency in pain management.11
Dyspnea
Dyspnea, the subjective sensation of breathlessness, is a frequent and distressing symptom, particularly in dying patients. Opioids and benzodiazepines are the most widely prescribed medications for treating dyspnea. As death approaches, a clinician may use continuous infusions to manage symptoms and relieve suffering if scheduled or as-needed doses are not adequate. The clinician should continually assess the patient and make adjustments that will control symptoms.12
Restlessness
Providers should recognize the signs and symptoms of the restlessness associated with delirium at the end of life (Table 2).13 The most common identifiable cause of delirium in the hospital setting is medication: anticholinergics, sedative-hypnotics (eg, benzodiazepines), and opioids. Delirium and restlessness at the end of life are usually characterized by anguish (spiritual, emotional, or physical), anxiety, agitation, and cognitive failure. The treatment of terminal delirium usually requires the use of a major tranquilizer such as haloperidol.14
Signs of End-of-Life Restlessness
Death Rattle
As responsiveness decreases toward the end of life, it becomes increasingly difficult for patients to control oropharyngeal secretions. The death rattle of the actively dying is the sound of air movement across pooled secretions. Although not a cause of suffering for the dying, the death rattle can be disturbing for loved ones to hear. Repositioning the patient's head and using anticholinergics such as atropine or scopolamine are the mainstays of treatment.15
PSYCHOSOCIAL, SPIRITUAL, AND BEREAVEMENT SUPPORT
Once the physical adverse symptoms and distress have been successfully addressed, it is important to broaden the integrated response of the interdisciplinary treatment team to address the psychosocial and spiritual issues that are an inherent part of the dying process. A comprehensive psychosocial and spiritual assessment allows the team to lay a foundation for healthy patient and family adjustment, coping, and support. Skilled expert therapeutic communication through facilitated discussions is beneficial to maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death (Table 3).16
Psychosocial and Spiritual Assessment of the Patient With a Life-Threatening Illness: Sample Screening Questions
Compassionate palliative care requires a professional readiness of those specialized in this field to explore the integrity-preserving issues that will foster growth in dignity and transcendence. Reflective open-ended questions are key in optimizing this communication and assessing the willingness of the patient and caregivers to engage. Physicians, psychologists, nurses, social workers, and chaplains can assimilate and negotiate the interpersonal relationship skills and intimacy required to enhance the patient's peace and psychosocial spiritual comfort (Table 4).16
Useful Questions for Clinicians
THE “WORK” OF DYING
Many patients imagine that death comes suddenly, but for many, the knowledge that one's death is imminent comes first. Those with this awareness often must complete certain tasks to allow a peaceful death such as offering forgiveness, being forgiven, acknowledging regrets, finding closure in professional and community relationships, and saying goodbye to family and friends.
GUIDELINES
The National Cancer Comprehensive Network (NCCN) has published guidelines for the palliative care of cancer patients.17 Recommendations offered by NCCN cover many of the topics discussed in this article and are an excellent resource for the palliative care of patients with cancer and other life-threatening conditions.
CONCLUSION
The role of palliative care at the end of life is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms patients experience. As death approaches, the symptom burden of a patient may worsen and require more aggressive palliation. As comfort measures intensify, so does the support provided to a dying patient's family. Once death has occurred, the role of palliative care focuses primarily on the support of the patient's family and bereavement.
This article meets the Accreditation Council for Graduate Medical Education and American Board of Medical Specialties Maintenance of Certification competencies for Patient Care and Medical Knowledge.
- Academic Division of Ochsner Clinic Foundation
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