Palliative Care in the ICU

1. Palliative Care in the ICU Lori Popejoy, PhD(c), RN, BC, GCNS Research Coordinator Boone Hospital Center

3. Technology and Treatment Callahan (1993) identified a � a vanishing line between life and death� Technological imperative Orchestration of death 70% of all ICU deaths occur after a decision to forego or withdraw life sustaining technology or treatment (Predergast, 1998)

4. Technology and Treatment The decision to withhold treatment is more common than the decision to withdraw (Tolle et al, 2000) The decision to withdraw life support has been described as a de facto standard of care in U.S. hospitals (Luce, 1997) Data indicates that (Fins, et al.1999): 77% of patients in the ICU had DNR orders 46% had comfort plans in place yet many continued to receive antibiotic treatment (41%) and blood draws (30%)

5. Pain Management 50% of patients in the SUPPORT trail described directly or indirectly through proxy reports that they experienced moderate to severe pain in the last 3 days of life (Lynn et al., 1997) Patients in palliative care had pain identified 3x more often than patients on the MICU (Paice et al, 2004)

6. Pain Management 20% of patients in the MICU did not receive treatment for pain or dyspnea (Paice et al., 2004) Surgical ICU nurses gave 37% of allowed doses of narcotics for pain (Whipple, 1995) Restraints were used more often in the ICU (Paice et al., 2004)

7. Symptom Management 55-75% of ICU patients with cancer experienced pain, anxiety, sleep disorders, or unsatisfied hunger or thirst (Nelson et al., 2001) ICU patients were found to have symptom distress related to (Paice et al., 2004) Pulmonary congestion (92%) Confusion (86%) Fever (78%) Dyspnea (78%)

8. Symptom Management 60% of patients with respiratory failure reported anxiety and dyspnea (Somogyi-Zalud et al., 2000) Sleep disturbances and delirium were also common (McCusker, 2001)

9. Suffering Suffering is more than physical suffering Morse (2001) identified suffering as profound sorrow associated with the irrevocable changes that illness and death have on the future hopes and dreams of individuals and their family members Suffering of the patient and/or family is frequently not addressed

10. Power of the ICU Patients and family members believe that the ICU can offer remarkable control over recovery and death (Campbell, 2002) Technological imperative leaves the impression that there is always something more that can be done (Campbell)

11. Power of the ICU Initially family members may feel optimistic about the patient�s recovery, but ultimately they may have to identify that a good death is the best that can be hoped for Decisions unfold over time (Karlawish, 1996) Good death A death free from avoidable distress and suffering for the patient, family members, and caregivers, which is in general accord with the patient�s and family member�s wishes and is consistent with clinical culture and ethical standards (Tolle et al., 2000)

12. Patient and Family Decision-Making Use of advanced directives Chose of one family member as proxy may be an artificial mechanism for decision-making Patients are expected to make decisions about issues for which they have no real world experience Patients may prefer not to make the decision ahead of time but rely on family decision makers Families do not always speak in a unified voice (Arnold, & Kellum, 2003; Jacobs, 1998; Pulchalski et al, 2000; Reubenfeld, & Curtis, 2003)

13. Communication Families hear differing viewpoint primarily from physician specialists (Asch et al, 1997; Counsel, & Guin, 2002) Leads to confusion Anger Hostility Frustration This was strongly supported by the ICU focus groups as main source of nurse frustration

14. Communication Health care team members do not always agree on the diagnosis or best treatment for a patient HCT members have personal issues about death and dying that limit their ability to effectively communicate with patients and families Physicians did not report problems communicating with nurses, but nurses do report problem communicating with physicians (Baggs & Schmitt, 2000)

15. Communication ICU focus group revealed that nurses did not believe they were empowered to talk to family members about the possibility of death Nurses also reported that they will always answer questions with honesty even if it means that they will potentially be �in trouble�

16. Communication Patients may be willing to live in a physical state that many of us would deem unacceptable (Olivero, & Fraulo, 1998) Tolerance for treatment burden is highly individualized (Rushton et al., 2002)

17. Be Careful What You Ask Physicians and nurses are not able to predict a patients desire for resuscitation (Puopolo, 1997) It is not helpful to ask vague questions such as � do you want everything done� Everything is simply not understood by most people It is important to understand what makes the patients life worthwhile What do they wish to be able to continue doing in their life What goals they have for the future

18. Difference between knowing and understanding It takes time for information to move from being known and to being understood Family conferences are strongly encouraged (Curtis, 2001) Frequent Uninterrupted Greater than 10 minutes in length HCT members should listen more than they talk By the time the first conference as taken place the family already has preconceived information about the patients condition and the HCT (Kaufman, 1998)

19. Barriers to using Palliative Care Principles in the ICU Difficulty identifying who is going to die Palliative care is often used only when intensive interventions have failed Reluctance to openly discuss the potential for death early in the patient�s stay ICU environment may not be conducive to family involvement

20. Models of Palliative Care Transitional model Partially integrated model Incorporates ideals of liberalized visiting and aggressive pain and symptom control Mixed Model Patients receive aggressive treatment Simultaneously receive preparation for the possibility of death (Field, & Cassel, 1997)

21. Models of Palliative Care Mixed model Recognition of the limits of technology Recognizing the potential for death (Miller et al, 2001) Move energy toward Treatment Open communication Shared decision-making Aggressive management of symptoms Emotional support for suffering

22. Possibilities for Change Grant for the development and evaluation of a palliative care program in the ICUs Team that includes palliative care specialist, the palliative care medical director, oncology and integrative therapies director, oncology social worker, ICU director, ICU manager, research coordinator Other staff participants as the project unfolds Units involved include the MICU, SICU, NSICU

23. Possibilities for Change Mixed model has been selected Using criteria developed by Miller, Boyle, and Forbes (2001) and the Quality Indicators for EOL Care a plan has been developed for evaluation of the current system that includes: Evaluating the culture of the ICUs Focus groups with ICU nurses (done not analyzed) Delineate which model of EOL care is used in each unit

24. Possibilities for Change Identify problems inherent in predicting death Evaluate communication flow Focus groups Physician input Evaluate EOL protocols and standards of practice Can we use what is developed for the transitional model used throughout the hospital Review the role of Chaplaincy Social work Scope of nursing practice

25. Possibilities for Change Evaluate the role of integrative therapy Evaluate communication with patients and family members Evaluate protocols for withdrawal of life support Evaluate bereavement protocols Including staff debriefing and grief Need for this was supported in the focus groups

26. What do we hope to accomplish? The broad goal at this time is to make palliative care in the ICU more acceptable to medical staff members and nurses, so that patients can receive optimum care. Our hope is that the mixed model will more closely align to the goals of ICU treatment. The transitional model has not proven to be effective in the ICU environment.