Integrating Palliative Care into Daily Practice: When and How
September 1, 2013 9 minutes read
Integrating Palliative Care into Daily Practice: When and How
ABSTRACT & COMMENTARY
By Leslie A. Hoffman, RN, PhD
Professor Emeritus, Nursing and Clinical & Translational Science, University of Pittsburgh
Dr. Hoffman reports no financial relationships in this field of study.
Financial Disclosure: Hospital Medicine Alert’s physician editor, Kenneth P. Steinberg, MD, peer reviewer William Thompson, MD, executive editor Russ Underwood, and associate managing editor Jill Drachenberg have no relevant financial relationship related to the material presented in this issue.
Patients, clinicians, and policy makers are increasingly focused on ways to improve the quality of care delivered and provide support to patients and families at the end of life (EOL). Palliative care has been advocated as a means to assist in accomplishing this goal. The objectives of palliative care are well known — to provide expert management of pain and other distressing symptoms, offer psychological and spiritual support, and improve the quality of life for the patient and family.1,2 Usually implemented in a multidisciplinary approach, palliative care clinicians can also assist in evaluating family dynamics and perspectives, discuss treatment options and likely outcomes and assist in negotiating goals of care at the EOL.1,2 Ideally, palliative care should be initiated early in the course of illness, as a means of assisting patients and families to manage distressing symptoms, regardless of the prognosis.
There are a number of resources, exemplified by the Center to Advance Palliative Care, that provide expertise, tools, and resources to enable more widespread use of palliative care in diverse settings.1,2 There is also strong evidence for the benefits of palliative care. In a study of 151 patients with metastatic non-small lung cancer, those randomized to early palliative care reported a better quality of life and fewer depressive symptoms.3 Fewer patients in the early palliative care group received aggressive end-of-life care (33% vs. 54%), but median survival was longer (11.6 vs. 8.9 months). However, despite demonstrated benefits, studies suggest there are substantial barriers to its use.4,5 The purpose of this essay is to discuss common failures in EOL planning and strategies that have been successful in increasing the use of palliative care as a means to improve the quality of care for patients with acute and critical illness.
Failures in EOL Planning
• High-risk patients have not discussed goals of care and, therefore, do not understand the realities of their illness. Studies suggest that patients at high-risk, defined as those with end-stage disease, infrequently have documentation of their care preferences. A multicenter study that surveyed 278 patients ≥ 80 years of age with advanced pulmonary, cardiac, or liver disease or metastatic cancer who were hospitalized for an acute medical or surgical problem found that the majority (76%) had thought about EOL care and few (12%) preferred life-prolonging care.6 Of those expressing a preference, only 28% had a written order in their medical record stating the goal of care. Agreement between patients’ expressed preferences for EOL care and documentation in the medical record was low (30%). Notably, the study data were collected between September 2011 and March 2012 and are therefore recent. Findings illustrate two concerns — conversations are not reliably being initiated and, if they occur, are not consistently documented.
• No systematic approach to identifying high-risk patients. Although choices can vary, one option is to define high-risk patients as those whose condition might become terminal within the next 12 months.7 Choice of this time point allows time for discussion, clarification and documentation. A second recommendation is that initial discussions focus on preferences, e.g., what is important, or not important, rather than specific topics, e.g., code status.7 If EOL discussions are delayed, there is a risk that decisions will occur during a medical crisis, e.g., emergency department or ICU admission, rapid response team activation, and the patient may lose decision-making capacity. Surrogates tend to choose more aggressive care, especially if there has been no prior discussion of preferences. Not having an early discussion complicates decision-making.6,7
• Inadequate clinician comfort/ competency in EOL discussions. Conversations about EOL topics are inherently difficult to initiate. One approach is to think about the progression of disease as a series of transitions. In the example of a cancer diagnosis, transitions include learning about the initial diagnosis, its progression, and that no further treatment is possible. At each point, care changes and, as well, the need for clarification about preferences. How these conversations are framed, or whether they are held, can influence patient coping ability and hope.8 Suggestions are to elicit concerns, express empathy, and balance hope and realism. This approach has been summarized in the phrase, "hope for the best but prepare for the worst." Thus, a response for a patient who expresses hope for remission when this appears unlikely might be: "I share that hope with you but I am wondering if we could also talk about what will happen if things don’t go as we hope."8
• Information about patient wishes is not clearly and predictably recorded in the electronic health record (EHR). The Serious Illness Communication Checklist, shown on page 51, provides suggestions about questions to ask to elicit preferences.7 Omissions can still occur; therefore it is advisable to embed the checklist into the electronic health record (EHR), making it readily accessible to anyone providing care for the patient. Ability of this checklist to improve communication is being evaluated in an ongoing clinical trial that is recruiting physicians and nurse practitioners as participants.9
• Family meetings occur late in ICU admission, rather than early and systematically.
In the critical care setting, best outcomes appear to occur when palliative care is made an integral part of the care delivered to all patients. Lamba and colleagues10 designed a structured palliative care program that was integrated into standard SICU care for all patients regardless of their prognosis, including all liver transplant service patients. The program was comprised of 5 steps grouped into Part I and Part II which began at SICU admission. In Part I, each patient had a palliative care assessment within 24 hours of ICU admission and the family received psychosocial support. The assessment consisted of delineating prognosis, advance directives, family support, surrogate decision maker, and pain, as well as other symptoms. In Part II, an interdisciplinary family meeting was held within 72 hours of ICU admission, regardless of patient prognosis. During this meeting, likely patient outcomes, treatment options, and goals of care were discussed. A comprehensive interdisciplinary care plan was placed in the medical record. The plan was discussed during morbidity and mortality rounds and in peer review. During the intervention, mortality rates were unchanged but do not resuscitate (DNR) status increased (52%-81%), withdrawal of life support increased (35%-68%), and DNR was initiated earlier (38 vs. 19 days). Family responses were highly positive. In a second study, a similar plan was instituted in a MICU.11 In this study, the palliative care and MICU attending team held rounds each morning to identify patients in need of a consult, and training in palliative care concepts was provided for fellows and nurses. Again, this plan increased referrals. Based on findings from these studies and others with no systematic method to identify patients in need of referral, a systematic approach seems essential to ensure that palliative care is available to all who can benefit from this service.
As with any aspect of care, there are considerations related to reimbursement. Issues related to the patient’s prognosis and treatment plan are complex and decisions about future goals can have life-or-death implications. Meetings with families therefore are time-intensive. Detailed information on reimbursement is available in a recent article.12
• Patients are admitted to the ICU who cannot benefit from this level of support.
Optimally, use of a systematic process for identifying high-risk patients, identifying preferences, and documenting this information in the medical record, can avoid this pitfall. If not, use of a structured approach to offering palliative care, as described above, can assist in optimally managing care and future decisions.
• Patients have inaccurate beliefs about PC. The term palliative care appears firmly established in medical literature, which may be unfortunate. Patients confuse palliative care with hospice care and, therefore, may equate use with a "death sentence."13 The phrase "supportive care" seems much more appropriate; it better describes the essential components of palliative care, e.g., management of distressing physical symptoms, psychological and spiritual support with the goal of an enhanced quality of life for the patient and family.
|
Serious Illness Conversation Guide* |
EHR Documentation Examples |
|
1. What is your understanding now of where you are with your illness? |
Appropriate Underestimates Overestimates |
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2. How much information about what is likely ahead would you like me to share? |
Do not wish to know Fully discuss, include family. Fully discuss, exclude. |
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3. If your health situation worsens, what are your most important goals? |
Lack of pain Able to be independent Mentally coherent |
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4. What are your biggest fears and worries about your future situation with your health? |
Pain and discomfort No longer in control Mentally impaired |
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5. What abilities are so critical to you that you can't imagine living without them? |
List critical abilities |
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6. If you become sicker, how much are you willing to go through for the possibility of gaining more time? |
OK, if not too toxic OK, if some potential of success Nothing more, etc |
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7. How much does your family know about your priorities and wishes? |
Mostly with wife, not children, etc. |
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* Adapted from reference 7. |
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Summary
Palliative care has many benefits but is used less consistently and frequently than desirable. As a consequence, patients and families are not offered the benefits of this supportive service and clinicians are challenged to assist patients to make decisions, often in times of crisis. The best approach for changing this consequence appears to include developing a structured approach which entails beginning discussions early for those with end-stage disease and incorporating a checklist with details about preferences in the EHR. In settings likely to admit high-risk patients, a structured approach that entails offering palliative care to all patients appears most effective. Staff therefore become active participants and can support use. Finally, it would seem beneficial to change terminology to "supportive care," although this is unlikely to happen.
References
- Center to Advance Palliative Care http://www.capc.org/building-a-hospital-based-palliative-care-program/case/definingpc. Accessed July 25, 2013.
- Nelson JE, Bassett R, Boss RD, Brasel KJ, Campbell ML, Cortez TB, Curtis JR, Lustbader DR, Mulkerin C, Puntillo KA, Ray DE, Weissman DE for the Improve Palliative Care in the Intensive Care Unit Project. Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU). Crit Care Med 2010;38(9):1765-72.
- Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small cell lung cancer. N Engl J Med. 2010;363(8):733-42.
- Penrod JD, Pronovost PJ, Livote EE, Puntillo KA, Walker AS, Wallenstein S, Mercado AF, Swoboda SM, Ilaoa D, Thompson DA, Nelson JE. Meeting standards of high-quality intensive care unit palliative care: clinical performance and predictors. Crit Care Med. 2012;40(4):1105-12.
- Gonsalves WI, Tashi T, Krishnamurthy J, Davies T, Ortman S, Thota R, Aldoss I, Ganta A, Kalalah M, Didwaniya N, Eberle C, Ganti AK, Silberstein PT, Subbiah S. Effect of palliative care services on the aggressiveness of end-of-life care in the Veteran’s care cancer population. J Palliat Med 2011;14(11):1231-1235.
- Heyland DK, Barwich D, Pichora D, Dodek P, Lamontagne F, You JJ, Tayler C, Porterfeld P, Sinuff T and Simon J for the ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team and the Canadian Researchers at the End of Life Network (CARENET. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med 2013:173(9):778-87.
- Block SD. What is the optimal role for palliative care consultants in the ICU? Presentation at the American Thoracic Society International Conference, 5/17/2013.
- Evans WG, Tulsky JA, Back AL, Arnold RM. Communication at times of transitions: how to help patients cope with loss and re-define hope. Cancer J 2006;12(5):417-424.
- http://www.clinicaltrialsgps.com/search-clinical-trials/trial-36781/
- .Lamba S, Murphy P, McVicker S, Smith JH, Mosenthal AC. et al. Changing end-of-life practice for liver transplant service patients: structured palliative care intervention in the surgical intensive care unit. J Pain Symptom Manage 2012; 44(4):508-517.
- .Villarreal D, Restrepo MI, Healy J et al. A model for increasing palliative care in the intensive care unit: enhancing interprofessional consultation rates and communication. J Pain Symptom Manage 2011;42(5):676-679.
- .Lustbader DR, Nelson JE, Weissman DE, Hays RM, Mosenthal AC, Mulkerin C, Puntillo KA, Ray DE, Bassett R, Boss RD, Brasel KJ, Campbell MI, Cortez TB, Curtiss JR for the IPAL-ICU project. Physician reimbursement for critical care services integrating palliative care for patients who are critically ill. Chest 2012;141(3):787-792.
- .Quick P. Palliative care and its benefits: a consultant’s viewpoint. Journal for Nurse Practitioners 2007: September: 566-568.
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