Susan Brajtman, RN, PhD1, David Wright, RN, MSc(A)2, David B. Hogan, MD, FACP, FRCPC3, Pierre Allard, MD, PhD, FRCP(C)4, Venera Bruto, PhD, CPsych5, Deborah Burne, RN, BA (Psych), CPMHN(C)6, Laura Gage, MD, FRCPC7, Pierre R. Gagnon, MD, FRCPC8, Cheryl A. Sadowski, BSc (Pharm), PharmD, FCSHP9, Sherri Helsdingen, BA10, Kimberley Wilson, MSW, BASc11
1 Associate Professor, School of Nursing, University of Ottawa, Ottawa, ON, 2 Doctoral Candidiate, School of Nursing, University of Ottawa, Ottawa, ON, 3 Professor and the Brenda Strafford Foundation Chair in Geriatric Medicine, University of Calgary, Calgary, AB, 4 Full Professor, Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, 5 Clinical Neuropsychologist, Assistant Professor, Psychology, Department of Psychology, College of Social and Applied Human Sciences, University of Guelph Psychology Program, University of Guelph-Humber, Toronto, ON, 6 Faculty, Sheridan College and Institute of Technology and Advanced Learning, Oakville, ON, 7 Director, Special Services, Ontario Shores Centre for Mental Health Sciences, Whitby, and Assistant Professor (Associate Faculty), Department of Psychiatry, University of Toronto, Toronto, ON, 8 Professor, Université Laval, Researcher, Laval University Cancer Research Center, CHUQ-Hôtel-Dieu de Québec, and Maison Michel-Sarrazin, Québec, QC, 9 Associate Professor, Faculty of Pharmacy and Pharmaceutical Sciences, University of Alberta, Edmonton, AB, 10 Project Manager, Canadian Coalition for Seniors’ Mental Health, Toronto, ON, 11 Executive Director, Canadian Coalition for Seniors' Mental Health,Toronto, ON.
Delirium at the end of life is common and can have serious consequences on an older person’s quality of life and death. In spite of the importance of detecting, diagnosing, and managing delirium at the end of life, comprehensive clinical practice guidelines (CPG) are lacking. Our objective was to develop CPG for the assessment and treatment of delirium that would be applicable to seniors receiving end-of-life care in diverse settings.
Using as a starting point the 2006 Canadian Coalition for Seniors’ Mental Health CPG on the assessment and treatment of delirium, a team of palliative care researchers and clinicians partnered with members of the original guideline development group to adapt the guidelines for an end-of-life care context. This process was supported by an extensive literature review. The final guidelines were reviewed by external experts.
Comprehensive CPG on the assessment and treatment of delirium in older adults at the end of life were developed and can be downloaded from http://www.ccsmh.ca.
Further research is needed on the implementation and evaluation of these adapted delirium guidelines for older patients receiving end-of-life care in various palliative care settings.
Key words: Delirium, end of life, evidence-based practice, guidelines, older adults, palliative care
Delirium is an important clinical condition affecting many older adults at the end of their lives. Nearly 90% of terminally ill patients or clients reportedly become delirious before death.(1) A palliative care emergency,(2,3) it can be extremely distressing to both the dying person and his or her family.(4) Delirium compromises effective communication between patients or clients and their loved ones during a critical time of impending permanent separation. It can result in painful memories that are carried forward into the bereavement process.(5–7) Often not recognized, delirium at the end of life interferes with the assessment and management of other physical and psychological problems.(8,9) It impedes the ability of patients or clients to formulate plans and make decisions.(10) Finally, delirium can constitute a significant safety risk for the patient or client, family members, and staff.
Within palliative care programs the management of terminally ill patients or clients with a delirium is generally subsumed under a broad symptom-control approach. General guidance might be provided by clinical practice guidelines (CPG) in palliative care,(11) but these guidelines lack the detail required to address the complex challenges associated with the assessment and management of delirium at the end of life. Delirium guidelines, on the other hand, do not explicitly address the unique needs, constraints, and trade-offs that arise in the care of patients or clients who are terminally ill. (12–14) The need for CPG dealing specifically with delirium as experienced at the end of life was the motivation for the work described in this paper.
In 2005 an interdisciplinary team of experts from the disciplines of geriatric medicine, geriatric psychiatry, neuropsychology, nursing, pharmacy, social work, health policy, and library science was brought together by the Canadian Coalition for Seniors’ Mental Health (CCSMH). This group developed a CPG on the assessment and treatment of delirium in older adults based on a systematic review of the available literature. The literature examined included prior CPG, meta-analyses and reviews dealing with delirium (published between January 1995 and May 2005), and original research (published between January 1999 and May 2005). Based on the literature review and the expert opinion of the CPG development group, a series of consensus-derived recommendations were made. These CPG have been widely disseminated across Canada to interdisciplinary care teams, health-care professionals, administrators, and policy makers whose work focuses on the senior population. A full description of the process used to develop them can be found elsewhere.(12)
To address the issue of delirium in an end-of-life population, the CCSMH CPG were taken as our starting point. Though much of the approach to the assessment and management of delirium outlined in these CPG could be adopted without modification, the unique needs of the end-of-life population necessitated adapting the original recommendations in certain areas. Both the original and modified delirium guidelines were developed for older persons (65+ years of age). While the majority of deaths in our society occur among those 65+, we feel many of the resulting recommendations will be relevant to adult patients or clients of any age.
In January 2008, the Guideline Adaptation Group for the Assessment and Treatment of Delirium in Older Adults at the End of Life (from now on referred to as the Guideline Adaptation Group) was formed (see Appendix A). The Guideline Adaptation Group consisted of researchers and clinicians with expertise in palliative care and members of the original CCSMH guideline development group. The palliative care researchers were members of two New Emerging Teams in palliative care funded by the Canadian Institutes of Health Research (CIHR): the End-of-Life Care for Seniors New Emerging Team(15) based at the University of Ottawa and the Developing, Evaluating, and Implementing New Interventions in Palliative Care New Emerging Team based at Laval University. Clinical experts on the interdisciplinary panel represented the disciplines of palliative care medicine, geriatric medicine, geriatric psychiatry, neuropsychology, nursing, pharmacy, and social work. Working groups of two to three experts, led by a member of the Guideline Adaptation Group, were organized around six topics or issues (i.e., legal and ethical issues; prevention; detection, assessment, diagnosis, and monitoring; nonpharmacological management; pharmacological management; and education).
The Guideline Adaptation Group and additional clinicians and researchers with expertise in delirium, geriatrics, seniors’ mental health, and end-of-life care attended a 2-day workshop in January 2008. Funded by CIHR, this workshop dealt with adapting the initial CCSMH delirium guidelines to the end-of-life context. Each CCSMH CPG recommendation about the detection/diagnosis, nonpharmacological management, and pharmacological management of delirium in older persons was carefully reviewed. A tentative decision was made to reject, retain, or revise (often with suggested wording) them based on the judgment of the workshop participants about their validity, applicability, and relevance to end-of-life care.
Following the workshop, computerized searches for relevant manuscripts (published between 2005 and 2009) were conducted by a librarian and/or a research associate. Several major databases (MEDLINE, CINAHL, PSYCINFO, and EMBASE) were examined. Search terms included delirium and its synonyms (e.g., confusion, agitation, restlessness, organic brain syndrome) and palliative care and its synonyms (e.g., terminal care, hospice, dying, end of life). Targeted systematic searches were done for each of the working groups. Retrieved titles and abstracts were reviewed by working group members with relevant full articles retrieved for review. Members of the working groups identified other papers for review.
Based on the literature review and the results of the invitational workshop, the working groups adapted the original guidelines in their assigned area and came up with a series of draft recommendations. The strength of a recommendation was graded A to D based on the level of evidence in support of it (see Appendix B).(16) Please note that this is not an indication of the relative importance of the recommendation for clinical practice or quality of care. Some recommendations with little empirical support, resulting in a lower rating for strength on the scale used, are in fact critical components of the assessment and management of delirium at the end of life. In some cases, individual recommendations as they originally appeared in the CCSMH CPG were deemed to also apply to a palliative care context. However, the evidence level given in support of the recommendation sometimes required downgrading due to the lack of research conducted specifically in an end-of-life care population. In such situations, the strength of evidence would typically be downgraded by one level (e.g., from a C to a D).
The revised recommendations of each working group were reviewed by experts external to the guideline development and revision process. Any gaps or areas requiring clarification identified were addressed by the responsible working group. In the case of the legal/ethical section, a lawyer with extensive expertise in decisional capacity and associated ethical issues reviewed the adapted guidelines.
Once each working group finalized their recommendations, the Guideline Adaptation Group met to review and approve all of the recommendations made in the adapted guidelines. Eighty percent or more of the Guideline Adaptation Group had to support a recommendation for it to be included in the final document. Table 1 provides an overview of the guideline adaptation process.
TABLE 1 Overview of the guideline adaptation process
The complete adapted guidelines on the assessment and treatment of delirium in older adults at the end of life is available at http://www.ccsmh.ca. In the following sections, we will highlight a number of key issues that are discussed in the literature on delirium at the end of life and that informed the adaptation process.
As was the case for the original CCSMH delirium guidelines, the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision (DSM-IV-TR) criteria for delirium were used.(17) All three of the commonly described subtypes of delirium (hyperactive–hyperalert, hypoactive– hypoalert, and mixed) occur in palliative care settings.(18) The hypoactive–hypoalert subtype is often missed by family members and care providers in palliative care, though it can be as distressing to patients or clients as the hyperactive– hyperalert form.(19,20) It may be misdiagnosed as fatigue or depression(21) or wrongly considered part of the normal dying process. Moreover, clinicians should be aware that subsyndromal delirium (where patients or clients do not meet all of the diagnostic criteria for clinical delirium but nonetheless exhibit certain delirium-associated symptoms) can result in adverse clinical outcomes.(2,22)
Various terms have been used to describe delirium in terminally ill patients or clients, such as terminal delirium, terminal agitation, terminal confusion, and terminal restlessness. In the adapted guidelines, end-of-life delirium refers to any delirium experienced by a patient or client with an estimated life expectancy of 6 months or less due to any progressive disease. It may be reversible in up to half of all cases,(1) particularly when adverse effects to medications or metabolic abnormalities are underlying etiologic factors.(23) Younger age, less severe cognitive disturbance, and absence of organ failure are positively associated with delirium reversibility in terminally ill patients or clients.(24)Terminal delirium refers to delirium that occurs in the last few days or hours preceding death. It may be a consequence of the dying process and therefore not reversible, although the distinction between end-of-life and terminal delirium can be made only after the death of the patient or client. Even when delirium is not reversible, distressing symptoms should be addressed in all cases.(25–27)
Palliative care is whole-person health care that aims at relieving suffering and improving the quality of living and dying.(28) It is an approach to care that affirms not only the potential of terminally ill patients or clients to die peacefully but also to live fully until death. Integral to palliative philosophy is a commitment to family-centered models of care, as well as integrated attention to the physical, psychological, social, and spiritual aspects of health, illness, and dying.(29–32) Quality palliative care at the end of life is not limited to hospice or dedicated palliative care units, but rather can and should be provided wherever people are dying. Relevant settings may include residential care facilities, intensive care and acute medical/surgical units, and the home.
In a curative care context, an important clinical objective with delirium is the detection and treatment of the underlying cause.(33,34) However, at the end of life this is often not feasible, either because delirium is due to advanced and irreversible illness processes or because palliative goals of care preclude intrusive investigations or treatments that may be required to detect or address etiologic factors.(35,36) Goals of care for the patient or client should be established in all instances with the care provided taking them into account. These goals could be a desire to live as long as possible, to maintain functional abilities, comfort, to achieve important life objectives, or to relieve the burden on loved ones.(37) Establishing goals of care for an older adult with delirium approaching the end of life involves careful consideration of the medical, psychosocial, and cultural characteristics of the person, as well as the laws governing the determination of capacity and consent to treatment. It is not always a straight-forward process. Goals can change from day to day with fluctuations in the clinical condition of the patient or client. Concurrently held goals might conflict with each other. An individualized approach to determining the appropriate intensity of investigation and treatment of delirium is essential. In order to provide compassionate, respectful, and person-centered care of the individual and his or her family at the end of life, six core recommendations were developed to underlie the adapted guidelines (see Table 2).
TABLE 2 Core recommendations underlying the Adapted Guidelines on the Assessment and Treatment of Delirium in Older Adults at the End of Life
The adapted guidelines include sections on 1) legal and ethical issues, 2) prevention, 3) detection, assessment, diagnosis, and monitoring, 4) nonpharmacological management, 5) pharmacological management, and 6) education. A selection of these recommendations is provided in Table 3 (as noted, a complete list of all of the revised recommendations can be downloaded from http://www.ccsmh.ca). Particularly important considerations are the following:
TABLE 3 Selected examples of recommendations and their level of evidence taken from the Adapted Guidelines on the Assessment and Treatment of Delirium in Older Adults at the End of Life (available at http://www.ccsmh.ca)
Consent to treatment and the use of physical restraints: With a delirium, decisional capacity can fluctuate over hours and days. The use of restraints should be minimized. They should be applied only in exceptional circumstances.
Detection: This should not be based exclusively on brief cognitive tests like the Mini-Mental State Examination. (38,39) While several screening and severity instruments for delirium have been developed, the Confusion Assessment Method (CAM) has been validated in a palliative care setting(40) and is the one recommended.(41,42) Clinicians require adequate training on its administration to ensure acceptable sensitivity and specificity. The CAM for the intensive care unit(43,44) may be helpful for those patients or clients with an impaired ability to communicate because of, for example, a decreased level of consciousness from the effects of sedatives or analgesics. Other assessment tools include the Delirium Rating Scale-Revised-98,(45) the Delirium Symptom Interview,(46) the Memorial Delirium Assessment Scale,(47–49) and the Nursing Delirium Screening Scale.(50) This latter instrument uses a brief five-item scale. With it, the person’s status can be assessed throughout the day (e.g., each 8-hour nursing shift). It may be less burdensome than interview-based methods, as it does not require active patient or client participation. All these tools are only as an aid to the diagnosis and detection of delirium. They are not recommended as the sole means of identifying delirium, which ultimately rests on the skill and judgment of the clinician.
Nonpharmacological strategies to prevent and manage delirium: These typically precede pharmacological interventions and continue to be used in concert with them if and when pharmacotherapy is implemented. Examples include attention to normal body functions (e.g., bladder/bowel regulation, skin integrity, mobility) and promotion of a normal sleep–wake cycle. Clinicians should be sensitive to the patient’s or client’s environment and how it can be modified to help prevent delirium or minimize its severity. Several recommendations in this section of the adapted guidelines deal with communication strategies. Communication with a delirious patient or client can be very challenging. Even if the content of a delirious person’s speech is not understandable, it is important to demonstrate respect for the person’s lived experience. Cultural and linguistic considerations add a further layer of complexity.
Pharmacological therapies for symptom control: They are an important adjunct to delirium management, becoming especially important when delirium symptoms are very severe. If delirium becomes refractory to all possible and reasonable intervention efforts in accordance with the pre-established goals of care, palliative sedation may be considered. Palliative sedation is the deliberate reduction of consciousness to alleviate intolerable suffering.(51,52) Delirium is one of the most common indications for palliative sedation.(53) Specific guidelines for palliative sedation are beyond the scope of this document, though some information on it can be found in the pharmacological management section of the adapted guidelines.
Care of the delirious patient or client at the end of life necessitates consideration of the physical, psychological, social, and spiritual dimensions of the patient or client and his or her family experience. While these dimensions are often interrelated, recognition of the special aspects of each one can facilitate a more comprehensive and individualized approach. Physical care of the delirious patient or client includes judicious use of investigations to determine potentially reversible precipitating and predisposing factors, as well as the use of specific pharmacological and nonpharmacological management strategies. Psychological support for the patient or client involves addressing the cognitive changes, perceptual disturbances, and strong emotional reactions triggered by delirium. It is important to acknowledge that patients or clients are situated within a family and that family members also require information and support in coping with the delirium experience and in communicating with the dying patient or client. A person with delirium at the end of his or her life is no different from a person who does not have delirium from a spiritual perspective. They can have fears and existential distress that need attention. Of course, spiritual care of the delirious patient or client will require that communication strategies be tailored to his or her unique needs. Indeed, physical, psychological, social, and spiritual care of the delirious patient or client and his or her family requires creativity, empathy, attentiveness, patience, acceptance, and compassion.
Because delirium at the end of life is often reversible, searching for easily correctable causes is the first step in nearly all cases.(54) A fatalistic acceptance of delirium as an inevitable consequence of the dying process should be avoided. As stated previously, even when delirium is not reversible, distressing symptoms should be addressed in all cases. The overriding objective is to minimize the suffering experienced by patients or clients and their families. While taking into account goals of care, clinicians must ensure that they do not impose undue discomfort on patients or clients and families through overly burdensome approaches to diagnosis and management.(55,56) Professional caregivers, together with patients or clients and families, need to weigh the relative benefits and burdens of specific interventions while also considering other dimensions of well-being that are important to a quality end-of-life experience (e.g., dignity, comfort, and communication).
Delirium is a quality-of-care issue for dying patients or clients and their families. Effective approaches to the prevention, identification, and treatment of delirium have the potential to enhance comfort, facilitate “dying well” for patients or clients, and prevent negative psychological outcomes for the family in bereavement. These guidelines on delirium at the end of life for older adults hopefully provide practical and effective advice for clinicians. Major challenges exist in translating knowledge into routine clinical practice.(57) Further work is required on the implementation and evaluation of these adapted guidelines. This will inform the development of care pathways (specific care protocols) on delirium at the end of life.
Funding for this initiative was provided by the Public Health Agency of Canada, Population Health Fund, and the Canadian Institutes of Health Research (CIHR). The authors acknowledge and thank the workshop participants, consultants and external reviewers for their advice, support, and efforts in this initiative (Appendix C).
All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest, and none were reported.
Pierre Allard, md, phd, frcp(c), Full Professor, Division of Palliative Care, University of Ottawa, Clinical Scientist, Élisabeth-Bruyère Research Institute, affiliated with the University of Ottawa, Principal Investigator (NET) “Optimizing End of Life Care for Seniors”, Ottawa, Ontario (April 1, 2003 – March 31, 2010)
Susan Brajtman, rn, phd, Associate Professor, School of Nursing, University of Ottawa, Associate Research Scientist, Elisabeth Bruyère Research Institute, Co-Investigator (NET) “Optimizing End of Life Care for Seniors”, Ottawa, Ontario (April 1, 2003 – March 31, 2010)
Venera Bruto, phd, cpsych, Clinical Neuropsychologist, Assistant Professor, Psychology, Department of Psychology, College of Social and Applied Human Sciences, University of Guelph Psychology Program, University of Guelph-Humber, Toronto, Ontario
Deborah Burne, rn, ba (psych), cpmhn(c), Faculty, Sheridan College and Institute of Technology and Advanced Learning, Oakville, Ontario
Laura Gage, md, frcpc, Director, Special Services, Ontario Shores Centre for Mental Health Sciences, Whitby, Ontario, Assistant Professor (Associate Faculty), Department of Psychiatry, University of Toronto, Toronto, Ontario
Pierre R. Gagnon, md, frcpc, Professor, Université Laval, Researcher, Laval University Cancer Research Center, CHUQ-Hôtel-Dieu de Québec and Maison Michel-Sarrazin, Director, CIHR Research Team in Palliative Care, Hôtel- Dieu de Québec and Maison Michel-Sarrazin, Principal Investigator (NET) “Developing, Evaluating and Implementing New Interventions in Palliative Care”; Québec, Québec (July 1, 2004 – March 31, 2011)
David Hogan, md, facp, frcpc, Professor and the Brenda Strafford Foundation Chair in Geriatric Medicine, University of Calgary, Calgary, Alberta
Cheryl Sadowski, bsc (pharm), pharmd, fcshp, Associate Professor, Faculty of Pharmacy and Pharmaceutical Sciences, University of Alberta, Edmonton, Alberta
Peter Barnes, dmin, Assistant Professor, Human Sciences, St. Paul University
Jonathan Breslin, phd, Ethicist, North York General Hospital, Member Joint Centre for Bioethics, University of Toronto
Shirley H. Bush, mbbs, drcog, dch, mrcgp, dip pall med, fachpm, Assistant Professor, Division of Palliative Care, University of Ottawa Palliative Care Physician, The Ottawa Hospital/Bruyère Continuing Care
Mary Egan, phd, Associate Professor, Occupational Therapy, University of Ottawa
Eamonn Eeles, mbbs, mrcp, msc, Consultant Geriatrician/Physician, Faculty of Medicine, Dalhousie University (September 2007 – September 2009), UK Consultant Geriatrician/Physician, University Hospital Llandough, Cardiff
Rory Fisher, mb, Regional Geriatric Program, Sunnybrook Health Science Centre, Professor Emeritus, Department of Medicine, University of Toronto
Chris Frank, md, fcfp, Clinical Leader, Specialized Geriatric Services, Providence Care, Past President, Canadian Geriatrics Society
Bruno Gagnon, md, msc, Assistant Professor, Department of Medicine, Faculty of Medicine, McGill University, Clinical Scientist, Division of Clinical Epidemiology, McGill University Health Centre
David Globerman, bsc, msw, Founder, The Running to Daylight Foundation, the Ben Globerman Memorial
Pippa Hall, md, ccfp, med, fcfpc, Full Professor, Department of Family Medicine, Palliative Care Physician, Bruyère Continuing Care, Division of Palliative Medicine
Mark Handelman, ba, llb, mhsc [bioethics], Member of Tribunal, Ontario Human Rights Commission, former Vice-Chair, Ontario Consent and Capacity Board
Ellen Kampf, Social Worker, Baycrest
Dorothy Morris, rn, bsn, ma, ccn(c), Clinical Nurse Educator, Cardiac/Vascular Surgery, Vancouver Island Health Authority, Royal Jubilee Hospital
Millie Paupst, md, dtmh, frcpc, Oncology Psychiatrist, North York General Hospital
Daryl Roitman, md, frcpc, Medical Oncology/Hematology, Medical Director Cancer Care, North York General Hospital
Heidi N. Schmaltz, mdcm, frcpc, Geriatrician, Seniors’ Health, Calgary Zone, Alberta, Health Services Clinical Assistant Professor, Geriatric Medicine, University of Calgary
Beckie Walbourne, bcomm, pmp Operations Manager, Élisabeth-Bruyère Research Institute
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Canadian Geriatrics Journal, Volume 14, Issue 2, June 2011