Palliative Care in the ICU

Nurses can take a leadership role.

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Learning Scope #415
1 contact hour
Expires Jan. 7, 2015

You can earn 1 contact hour of continuing education credit in three ways: 1) Grade and certificate are available immediately after taking the online test. 2) Send the answer sheet (or a photocopy) to ADVANCE for Nurses, Learning Scope, 2900 Horizon Dr., King of Prussia, PA 19406. 3) Fax the answer sheet to 610-278-1426. If faxing or mailing, allow 30 days to receive certificate or notice of failure. A certificate of credit will be awarded to participants who achieve a passing grade of 70 percent or better.

Merion Matters is an approved provider of continuing nursing education by the Pennsylvania State Nurses Association (No. 221-3-O-09), an accredited approver by the American Nurses Credentialing Center's Commission on Accreditation.

Merion Matters is also approved as a provider by the California Board of Registered Nursing (No. 13230) and by the Florida Board of Nursing (No. 3298).

The goal of this continuing education offering is to review the latest information on palliative care in the ICU. After reading this article, you will be able to:

1. Discuss the current principles related to palliative and end-of-life care.

2. Identify resources to guide clinical practice when incorporating palliative care within intensive care nursing.

3. Apply care guidelines to current practice.

The author has completed a disclosure form and reports no relationships relevant to the content of this article.

Traditionally, an ICU is considered a place where everyone is cured and deaths are seen as a failure. However, 20 percent of deaths in the U.S. follow ICU admissions, usually after decisions to forgo life support.1

Over the past decade, nurses in ICUs find they straddle the line between providing full resuscitative care measures and advocating for their patients and the patients' families to communicate with the healthcare team in an effort to allow patients the right to refuse life-sustaining treatments. When acute conditions overlap for patients with a chronic condition, they may need ICU care. However, they do not desire full resuscitative measures for the long-standing chronic conditions.
Nurses often are caught in the middle when communication breaks down between the patient, family and healthcare providers.2 There are many reasons for miscommunication or, more realistically, no communication, but lack of understanding and denial about the patient's wishes are at the top of the list. Patients sometimes are fearful to voice their choices knowing they may be going against their family or healthcare providers.

Palliative care, a buzzword in many clinical settings, has been infusing into ICUs across the nation. As a result, many questions come to mind: What exactly is palliative care? Are hospice and palliative care synonymous? Can patients receive life-sustaining therapies and still qualify for palliative care principles?

The literature for palliative care within ICUs describes projects that aim to improve patient safety and to achieve patient and family satisfaction. Education, both formal and informal, exists for the healthcare worker. Many organizations also are promoting education to the average layperson. And, over the past decade, many clinical practice guidelines have evolved.

This article will help to navigate the world of palliative care within ICUs where nurses are actively leading the way. Key principles and terminology will be described and resources will be identified so advances in quality of care can be realized.

Palliative Care Definitions

The World Health Organization defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."3

The Center to Advance Palliative Care defines palliative care as "that which occurs throughout the entire spectrum of an illness and is indicated whenever there are significant burdens from an illness or trauma."4 The center refers to hospice nursing as that which is indicated at the end of life.

The Hospice and Palliative Nurses Association seeks to blend palliative and hospice nursing and to use evidence-based practice standards to assist nurses in "ensuring quality nursing care delivery; managing complex symptoms along with grief and bereavement; having the difficult conversations; educating healthcare providers and family about the hospice care or palliative care philosophy; influencing palliative nursing through leadership and research."5

Historically, for many healthcare workers in the ICU, palliative care was synonymous with hospice care. In literature reviews, palliative care was described by healthcare professionals with phrases such as "giving up," physician-assisted suicide or euthanasia, the last 24-48 hours, and the more typical cliché, death squads. Palliative care also was viewed as being developed because of the resistance in accepting hospice care.

Whirlwind of Emotions

In the fast-paced world of an ICU, a patient and family members can experience a whirlwind of emotions and realities, sometimes within a single day as the healthcare team's knowledge and ability to use technology strives to save a life. That technology can sometimes discover the life cannot be saved, and the patient and family are forced to move into a different realm of navigating through the grieving process while facing end-of-life care. And sometimes, somewhere in the middle of that continuum is the reality of living with a non-curable diagnosis and managing symptoms. It is at this point where palliative care principles guide the way.

The Center for Advancing Palliative Care advocates for the patient and family being seen as a unit of care. It further espouses that reducing the burden on the caregiver from the physical and emotional stresses associated with giving care and experiencing grief is another key aspect of palliative care.4

It is well-recognized and accepted that patients are hospitalized with multiple complex symptoms, and management of those symptoms is crucial in promoting quality patient care. The presence of an interdisciplinary approach engages a culture in an ICU where all team members feel empowered to speak up and practice in the role of patient advocate.

Principles of palliative care focus on symptom management and the patient and family are integral to determine preferences. The healthcare team is the facilitator of those preferences with the emphasis on comfort and quality of life. Many healthcare institutions that practice multidisciplinary rounds now are including palliative care nurses as part of the team.

IPAL-ICU

Today, two distinct specialties, ICU nurses and palliative care nurses, have begun to join together in an effort to provide the best care for a subgroup of unique patients, those who require episodic intensive care measures while maintaining the overall goal of supporting the patient's choice for treatment for chronic conditions and end-of-life care.

In 2010, the American Association of Critical-Care Nurses (AACN) introduced this new initiative organizationally, and in one of its journals stated, "The Center to Advance Palliative Care has launched the Improving Palliative Care in the ICU (IPAL-ICU) Project to promote a paradigm shift in the way that critically ill patients and their families are cared for in the ICU."6

In promoting the IPAL-ICU Project, the Center to Advance Palliative Care shared resources, knowledge and operational tools. In a similar pathway, the Institute for Healthcare Improvement supported the initiative Expedition: Integrating Palliative Care Principles in the ICU.

The IPAL-ICU Project provides healthcare professionals with a mechanism to share information, expertise, organizational structure, tools and patient-focused resources across the continuum of care. Its main purpose is to blend the worlds of ICU and palliative care successfully. In doing so, the IPAL-ICU Project encourages clinicians and hospital leaders to implement the principles associated with palliative care and to use any and all of the resources, including access to experts, so that a smooth transition is made for the patient and palliative care nursing is blended into the daily world of an ICU.

With the support of the National Institutes of Health, the IPAL-ICU Project also offers multiple tools, ranging from templates for critical care progress notes to suggestions for documenting family conference progress notes. Brochures for families explaining the concepts of palliative care and what to expect are available as well. References for professional education are provided with input from major medical and nursing societies, including the American Academy of Hospice and Palliative Medicine, Society of Critical Care Medicine and End-of-Life Nursing Education Consortium. The educational topics include the expected definitions and principles as they relate to palliative care as well as education related to communication skills, advanced directives and chronic critical illness.

National Consensus Project

Possibly one of the most successful endeavors involving the topic of palliative care was the formation of the National Consensus Project for Quality Palliative Care. With the goal of determining the "best of the best," the group developed the Clinical Practice Guidelines for Quality Palliative Care.7 Members include the Hospice and Palliative Nurses Association, American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care and the National Hospice and Palliative Care Organization.

The coalition works to set an example and promote national initiatives while leading the way for quality and performance assessments. From this standpoint, a universal approach could be established to ensure quality palliative care across the nation. The organization published its first edition of guidelines in 2004. With the increasing prominence of palliative care, they released the second edition in 2009.

The guidelines describe eight core standards: structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; spiritual, religious and existential aspects of care; cultural aspects of care; care of the imminently dying patient; and ethical and legal aspects of care.7

AACN Resources

The AACN has taken steps to align itself with the Center to Advance Palliative Care and the National Consensus Project for Quality Palliative Care. On the AACN's website, palliative care/end-of-life care is one of the three major advocacy projects of the organization.8 An entire educational section is dedicated to palliative and end-of-life care standards.

Any nurse can access the website and begin to learn about clinical practice standards within this subspecialty. A self-assessment module is designed to test individual skill and knowledge levels. It covers topics such as clarifying palliative vs. hospice nursing; integrating palliative care into life-sustaining measures; and differentiating symptoms (for example, suffering and physical pain) and specifically addressing anxiety, dyspnea, delirium and pain.

Anxiety

ICU patients experience the symptoms of anxiety, dyspnea, delirium and pain regardless of acute or chronic diagnoses. However, these symptoms also are specifically identified in the literature as those experienced by patients with chronic illness, which intensify during end-of-life stages. Therefore, recognition and treatment are of the utmost importance in providing quality nursing care.

Anxiety may be a related to a medical problem or in response to a medication. It also can be related to a psychological reason, which can be a patient's worry and concern or it can be related to a physical reason, such as medication withdrawal. Anxiety is a symptom not often identified in the actively dying patient. Nurses can assess and quantify anxiety using well-established assessment scales that are valid and reliable as described in the literature.

In ICUs, anxiety and sedation assessments coexist to provide relief in a world that can produce excess anxiety. The commonly used Sedation Assessment Scale assesses consciousness, agitation, anxiety, sleep and patient-ventilator synchrony. Incorporated within this assessment, anxiety is assessed by the nurse as a "patient's perceived anxiety" using a 5-point Faces Anxiety Scale ranging from no anxiety to extreme anxiety.9

The Richmond Agitation Sedation Scale, another assessment tool, combines the nurse's assessment of the patient (ranging from drowsy to combative) with the assessment of patient response to verbal and physical stimulation.10

In ICUs, the most common intervention is pharmacological regimens. Multiple medications are used, including fentanyl, morphine, propofol, midazolam, diazepam, haloperidol and dexmedetomidine hydrochloride. Monitoring response is achieved by continued assessment via scales such as the Sedation Assessment Scale or the Richmond Agitation Sedation Scale.

Dyspnea

Considered a qualitative experience, dyspnea is associated with discomfort. Dyspnea has distinct sensations to each patient and generally varies in intensity. Like anxiety, dyspnea may be related to any number of medical problems and/or to psychological and spiritual issues. Assessment of dyspnea can be achieved with validated tools in the literature.11

One of the most common clinical assessment tools for dyspnea is the Visual Analog Scale, adapted from the Borg Scale. In the 1970s, Borg described a scale of 6-20 and it was associated with perceived dyspnea with physical exertion. In subsequent modifications, the scale was adapted to a 0-10 scale with verbal expressions of severity. The descriptors range from 0 representing "not breathless at all" or "no shortness of breath," to 10 representing "extremely breathless" or "shortness of breath as bad as it can be."

There are more detailed assessment tools that evaluate multiple dimensions, such as the Chronic Respiratory Disease Questionnaire and the St. George's Respiratory Questionnaire. In the clinical setting within an ICU, a simple approach such as the Visual Analog Scale seems more appropriate.

Management of dyspnea includes non-pharmacological and pharmacological measures. Non-pharmacologic interventions include strategies to address clearing secretions, techniques in breathing retraining, energy conservation measures and relaxation methods. Pharmacologic therapies include multiple agents, with opioids leading as the drugs of choice in managing dyspnea. Other pharmacologic agents are bronchodilators, oxygen, corticosteroids, antibiotics and psychotropics.

As dyspnea is a frequent symptom in an ICU, patients are routinely assessed for its presence or absence. ICU nurses are cognizant that even though a patient is mechanically ventilated, they can experience dyspnea and also require routine assessment.

For patients in the end-of-life phase of care, the dilemma of providing comfort during withdrawal of life support is real. When the subject of withdrawing life support is reviewed and the patient is not expected to survive, the general rule of thumb for managing anxiety and dyspnea is to administer analgesics and sedatives when signs of distress appear.12

Delirium

Delirium is another frequently encountered symptom for patients in an ICU or those with a debilitating disease. Delirium is defined as a decrease in awareness or an inability to focus; symptoms generally occur within days or even hours in a patient who is normally alert and oriented. Delirium may present in the hypoactive form, such as lethargy, or the hyperactive form, such as restlessness and aggression.

When delirium presents, the initial steps are to rule out medical causes. The acronym DELIRIUM is sometimes used as a reference: D (drugs, depression, dehydration); E (endocrine, environment changes and electrolytes); L (loss of mobility, liver disease); I (infection, ischemia/hypoxia); R (reduced senses, renal failure); I (impaction: fecal); U (urinary retention); and M (malignancies, metabolic disorders).

The Confusion Assessment Method for the ICU (CAM-ICU) is a valid and reliable tool ICU nurses use to assess delirium. For patients who experience terminal delirium, a combination of sedatives, hypnotics and anesthetics may be required to manage refractory symptoms.12

Pain

In 1968, registered nurse Margo McCaffrey famously defined pain as "whatever the experiencing person says it is, existing whenever he says it does." Numerous reliable and validated pain scales are used at the bedside to guide pharmacological management, and morphine is the gold standard which other drugs are measured against.

The National Initiative on Pain Control describes some of the many scales used in assessing patients.13 With the Wong-Baker FACES Pain Rating Scale, the patient chooses a "face" ranging from smiling to crying. This scale can be used for people 3 years and older.

Another common scale is the 0-10 Numeric Pain Rating Scale introduced by McCaffrey with 0 representing no pain and 10 representing the worst possible pain. The McGill Pain Questionnaire is represented with an outline of the human body and pain is drawn in the outline using an "I" for internal pain and an "E" for external pain. Another example is the Pain Quality Assessment Scale, a comprehensive scale rating several aspects of pain descriptors.

Patients and families may fear the administration of pain medications because they do not want the patient to become addicted. According to the American Pain Society, the incidence of addiction when opioids are used for pain management is less than 1 percent. Another concern may be patients do not want to be groggy or unaware of their environment. Again, use of pain scales should help guide the dosing of medications to support patient's choice to avoid grogginess while alleviating discomfort.

An excerpt from an American Nurses Association position statement from 2003 describes one of the goals of nursing interventions for dying patients is to maximize comfort. It specifically promotes the use of medications in doses that sufficiently control pain as being of paramount importance. In other words, there is no ceiling dose on a pain medication when a patient continues to experience pain throughout the dying process.

The ANA introduced a revised position statement in 2010 noting it is not ethically appropriate to administer medication with the intent to end life.14 Topics were introduced with broader concepts involving care in the end-of-life stages. "Patient" is defined as including family. "Family" is further delineated as immediate family members by blood or marriage, same-sex partners and any person patients designate as a significant part of their life. "Care" not only implies the physical and psychosocial aspects but continues through the bereavement process.

End-of-Life Domains

The Robert Wood Johnson Foundation sponsored a multidisciplinary group to establish long-term changes in improving standards of care for palliative care in ICUs.15 One of the most widely recognized and adopted set of principles relates to the domains of care, and they are similar to the core standards from the National Hospice and Palliative Care Association. The group identified the seven end-of-life domains as:

• Patient and family-centered decision-making: Recognizes that the patient and family is a unit of care. Communication and the resolution of conflicts should be done as a unit to support the patient's wishes. Topics such as advanced directives, proxies and do-not-resuscitate orders should be addressed.

• Communication within the teams and with patients and families: Emphasizes that through the use of expert consultants, conflicts are discussed and resolved prior to meeting with patients and families; meetings continue throughout the illness continuum and include the dying process if indicated. Consistent and constant communication is the key in providing information to patients and families. This domain also identifies that institutions need to formally survey families to improve the process of palliative and end-of-life care. In addition, a mechanism for staff debriefing should be established.

• Continuity of care: The key to continuity is to assure all members are aware of the direction of care. If death is imminent, the institution needs to have a policy to provide compassionate care within a non-transfer/non-discharge status.

• Emotional and practical support for patients and families: This domain describes how to provide a full scope of support, including written explanatory brochures about the ICU, such as how to access services that may be required; providing privacy as much as possible; respecting cultural differences and supporting traditions when appropriate; and support through the dying process, including family bereavement.

• Symptom management and comfort care: The focus of this domain is on non-pharmacological and pharmacological therapies to alleviate or control symptoms. As described previously, the most common symptoms relate to anxiety/agitation, dyspnea, delirium and pain. Unnecessary diagnostic testing should be eliminated. Once decisions are made to withdraw life support, policies to guide the process should be in effect to minimize pain and anxiety for the patient and family.

• Spiritual support for patients and families: Institutions should have a process that offers and facilitates spiritual support and resources for patients and families that desire them. This process should include provisions for the cultural practices that provide the patient and family comfort.

• Emotional and organizational support for ICU clinicians: The healthcare team also will require support and debriefing. Being in close touch with the bedside caregivers will help to develop processes to support their needs.

At the Forefront

Palliative and hospice care have become a "matter of fact" within ICUs. Nurses can be at the forefront of taking a leadership role as an active member in interdisciplinary committees or team meetings. They can help to design a process that integrates palliative care specialists into the daily routine of the ICU and the use of literature for resources in helping to implement or sustain projects.16

References
1. Siegel, M. (2011). End-of-life decision making and care of the dying patient. American College of Chest Physicians. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.chestnet.org/accp/pccsu/end-life-decision-making-and-care-dying-patient?page=0,3 
2. Popejoy, L, Cheyney, L., Beck, M., et al. (2009). Intensive care unit nurse perceptions of caring for the dying: Every voice matters. Journal of Hospice and Palliative Nursing, 11(3), 179-186.
3. World Health Organization. (2004). Better palliative care for older people. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.euro.who.int/__data/assets/pdf_file/0009/98235/E82933.pdf 
4. Center to Advance Palliative Care. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.capc.org/
5. Hospice and Palliative Nurses Association. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.hpna.org/
6. The IPAL-ICU Project. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.capc.org/ipal-icu/ 
7. National Consensus Project for Quality Palliative Care. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.nationalconsensusproject.org/ 
8. American Association of Critical-Care Nurses. Palliative and end-of-life care. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.aacn.org/ 9. McKinley, S., Stein-Parbury, J., Chehelnabi, A., et al. (2004). Assessment of anxiety in intensive care patients by using the Faces Anxiety Scale. American Journal of Critical Care Medicine, 13(2), 146-152.
10. Richmond Agitation Sedation Scale. Retrieved Dec. 14, 2012 from the World Wide Web: http://www.mc.vanderbilt.edu/icudelirium/docs/RASS.pdf 
11. Dyspnea. Mechanisms, assessment, and management: A consensus statement. American Thoracic Society. (1999). American Journal of Respiratory and Critical Care Medicine, 159(1), 321-340.
12. American Association of Critical-Care Nurses. Promoting palliative care excellence in intensive care demonstration projects. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.aacn.org/WD/Palliative/Content/grantees.content?menu=Practice 
13. National Initiative on Pain Control. Pain assessment scales. Retrieved Dec. 14, 2012 from the World Wide Web: http://www.painedu.org/Downloads/NIPC/Pain_Assessment_Scales.pdf 
14. Congress on Nursing Practice and Economics and Center for Ethics and Human Rights Advisory Board. (2010). Position statement: Registered nurses' roles and responsibilities in providing expert care and counseling at the end of life. Retrieved Dec. 14, 2012 from the World Wide Web: http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Ethics-Position-Statements/etpain14426.pdf.
15. Clarke, E.B., Curtis, J.R., Luce, J.M., et al. (2003). Quality indicators for end-of-life care in the intensive care unit. Critical Care Medicine, 31(9), 2255-2262.
16. Nelson, J., Cortez, T., Curtis, J., et al. (2011). Integrating palliative care in the ICU: the nurse in a leading role. Journal of Hospice and Palliative Nursing, 13(2), 89-94.

Resource
The Joint Commission. What you need to know about your serious illness and palliative care. Retrieved Dec. 12, 2012 from the World Wide Web: http://www.jointcommission.org/assets/1/18/Palliative_brochure.pdf

Carol A. Knauff is critical care educator at Grand View Hospital, Sellersville, PA.




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