The Role of Palliative Care
at
the End of Life
Robin B Rome, MSN, FNP-C, Hillary H Luminais, RN, Deborah A. Bourgeois, MN, APRN, ACNS-BC, and Christopher M Blais, MD, MPH, FACP, FAAHPM
Ochsner J. 2011 Winter; 11(4): 348–352.
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.
Keywords: End of life, palliative care, symptom management
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.
Footnotes
Contributed by
The authors have no financial or proprietary interest in the subject matter of this article.
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