#229 Seizure Management in the Dying Patient

FAST FACTS AND CONCEPTS #229

SEIZURE MANAGEMENT IN THE DYING PATIENT

Jennifer Connelly MD and David E Weissman MD

Background
 Management of seizures in the dying patient without intravenous access, such as is in the home environment, is challenging. Seizures in this population can be due to primary or metastatic brain cancers, strokes, toxic/metabolic causes including hypoglycemia, or pre-existing seizure disorders. The actual incidence of seizures in dying patients is unknown, and while likely uncommon, they can cause tremendous distress to patients and families. This Fast Fact reviews management strategies for seizures near the end of life.



Seizure Prophylaxis
 Up to 40% of patients with brain tumors have a seizure at the time of diagnosis and another 20% develop seizures during the course of the illness. Although antiepileptic drugs (AEDs) are commonly started as prophylaxis at the time of brain tumor diagnosis, they have not been found to prevent seizures and the American Academy of Neurology Clinical Practice Guidelines do not support this practice (1). Thus, prophylactic AEDs can be safely discontinued in patients with brain tumors who have never had a seizure. For patients with a seizure history, including those with brain tumors, AEDs should be continued as long as possible. For patients who lose an enteric route and have no intravenous access, rectal administration of prophylactic AEDs is possible. Clinical judgment should be used as to whether to continue AEDs in this setting; it can be appropriate to simply stop them, particularly if the patient’s prognosis is very short. Phenobarbital, pentobarbital, carbamazepine, valproic acid, and lamotrigine can all be given rectally. Rectal absorption of other prophylactic AEDs is undefined and they should not be administered. None of the aforementioned AEDs need dose adjustments for rectal administration. Carbamazepine should be divided into small doses administered 6-8 times a day. Lamotrigone is administered rectally by crushing and suspending the chewable tablets in 10 mL of water. When clinically indicated, drug levels of lamotrigine should be monitored as rectal absorption is erratic.



Seizure Management

• Single self-limited seizure: Check for treatable causes such as hypoglycemia. If no reversible cause is identified, initiation of maintenance AED therapy should be considered, particularly if the patient is expected to survive more than a few weeks.

• Acute seizure or status epilepticus:

o Non-intravenous routes: Rectal diazepam (0.2 mg/kg or 10-20mg) is the drug of choice for status epilepticus and acute seizures lasting greater than two minutes due to its bioavailability, ease of administration, and short time to peak serum concentration (< 20 minutes). Diazepam can be repeated hourly until the seizure stops. Some authors suggest continuing 20 mg per rectum nightly to reduce the occurrence of further seizure events. Other rectal benzodiazepines are available (clonazepam, lorazepam, and midazolam), but take longer to reach peak serum levels. Sublingual lorazepam and intranasal midazolam are also available, but their use in the adult population is not well-studied.

o Parenteral therapy: When available, intravenous and subcutaneous benzodiazepines can be used and are usually effective at stopping a seizure in progress; intravenous lorazepam is preferred due to its long half-life. Clonazepam and midazolam can be given subcutaneously at doses similar to the intravenous route. If seizure activity persists, additional anti-epileptic medication should be provided using a loading and then maintenance dose. Patients with refractory seizures who have short prognoses and comfort-oriented goals of care should be considered for an anti-epileptic sedative such as midazolam or a barbiturate with the goal of deep sedation (see Fast Facts #106,107).



Parenteral AED Dosing and Routes:

Drug Status loading dose Maintenance dose

Diazepam 0.2 mg/kg or 10-20 mg PR 20 mg PR nightly

Lorazepam 0.1 mg/kg IV or IM



Midazolam 0.1-0.3 mg/kg IV or SC Titrate to control refractory seizures if needed

Clonazepam 1 mg IV or SC

Phenytoin 20 mg/kg IV 4-5 mg/kg/day IV divided TID

Fosphenytoin 20 mg/kg IV or IM 4-5 mg/kg/day IV or IM divided TID

Phenobarbital 10-15 mg/kg 1-3 mg/kg/day IV or IM

1200 mg/day SC (2)



Family Education
Family members should be counseled that all medications used to manage seizures can cause sedation and cardiopulmonary depression. Family members who have witnessed prior seizures often have great fear about seizure recurrence. Many hospice agencies have established seizure protocols and medication kits which can be stored at home, and will collaborate with physicians and families on establishing a ‘seizure plan’ for acute seizures. It is important to review with the family seizure safety, including not putting anything in the patient’s mouth and making sure the patient is in a safe environment.



References

1. Glantz MJ, Cole BF, Forsyth PA, et al. Practice parameter: anticonvulsant prophylaxis in patients with newly diagnosed brain tumors: report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurol. 2000; 54:1886-1893.

2. Krouwer H, Pallagi J, Graves N. Management of seizures in brain tumor patients at the end of life. J Palliat Med. 2000;3:465-475.

3. Davis M, Walsh D, LeGrand S, et al. Symptom control in cancer patients: the clinical pharmacolog and therapeutic role of suppositories and rectal suspensions. Support Care Cancer. 2002; 10:117-138.

4. Brown L, Bergen DC, Kotagal P, et al. Safety of Diastat when given at larger-than-recommended doses for acute repetitive seizures. Neurol. 2001; 56:1112.

5. Voltz R, Borasio GD. Palliative therapy in the terminal stage of neurological disease. J Neurol. 1997; 244[Suppl 4]:S2-S10.

6. Droney J, Hall E. Status epilepticus in a hospice inpatient setting. J Pain Symptom Manage. 2008; 36:97-105.



Author Affiliations: Medical College of Wisconsin, Milwaukee, WI.



Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).



Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Connelly J, Weissman DE. Seizure Management in the Dying Patient. Fast Facts and Concepts. April 2010; 229. Available at: http://www.eperc.mcw.edu/fastfact/ff_229.htm.

#228 Tapentadol

FAST FACTS AND CONCEPTS #228

TAPENTADOL

Rohtesh S Mehta MD, MPH and Robert M Arnold MD

Background
Tapentadol is a newly available oral analgesic, approved by the FDA in 2009 for the management of moderate to severe acute pain in adults. This Fast Fact reviews its pharmacology and use.


Pharmacology
Tapentadol is a centrally-acting, synthetic, oral mu-opioid receptor agonist which also inhibits norepinephrine and serotonin reuptake within the CNS. It is structurally and pharmacologically similar to tramadol.

Oral bioavailability ranges from 32% to 42%, with a half-life of 4 ½ hours.

The drug is metabolized in the liver (97% by Phase-2 conjugation) and excreted in the urine.

Tapentadol has no known pharmacologically active metabolites, no relevant CYP interactions, and no drug-drug interactions through cytochrome induction or inhibition (1).

There are no dosing adjustments required in mild-to-moderate renal or hepatic failure; it has not been studied in patients with severe impairments.


Research Data
The FDA approval was based on two industry-coordinated, randomized controlled studies conducted in patients with osteoarthritis and after bunionectomy. In these studies 50 mg doses of tapentadol was shown to be non-inferior to 10 mg of oxycodone immediate-release in the treatment of pain, but the incidence of nausea, vomiting, dizziness, and constipation was significantly lower (2,3). In another single-dose study involving patients undergoing molar extraction, tapentadol 200 mg demonstrated improved analgesia but higher sedation than 60 mg of oral morphine (4). Total daily doses greater than 700 mg on the first day of therapy and 600 mg on subsequent days have not been tested, nor has tapentadol been studied in children. Tapentadol has not been tested in cancer pain or in palliative care settings. There are not enough data to comment on whether the drug has a ceiling effect, or on its long-term safety and efficacy (the longest study was only 90 days). Finally, it has not been comparatively studied against tramadol.


Side Effects and Cautions
Tapentadol’s side effect profile is generally similar to opioids’ (although with milder GI side effects): nausea, vomiting, constipation, respiratory depression, pruritus, dizziness and drowsiness. As with tramadol, there is a theoretical increased risk of seizures, as well as serotonin syndrome if given with other serotonergic agents (e.g. antidepressants, drugs with monamine oxidase inhibitory effects). Abuse and addiction are possible as with any opioid agonist. An abstinence syndrome has not yet been described; in one study drug tapering was not required after 90 days of treatment (2).


Dosing and Cost
Tapentadol is available as 50, 75 and 100 mg immediate-release tablets. The initial dose is 50-100 mg every 4 hours (although a second dose can be given one hour after the initial dose). The average wholesale pricing for tapentadol is approximately $2 per 50 mg tab, $2.40 per 75 mg tab, and $3.20 per 100 mg tab. For comparison, tramadol costs $0.07/tab (50 mg), oxycodone costs $0.70 (15 mg tab), and morphine costs $0.18 (15 mg tab).


Summary
Tapentadol is a novel analgesic, with a 50 mg dose similar in efficacy to 10 mg of oxycodone. Currently its only clearly defined benefit over established opioids is its gentler GI side effect profile. Its cost, potential ceiling effect, safety concerns with drug interactions, and uncertainty about long-term efficacy and safety limit its current application otherwise, particularly in patients with chronic cancer pain.


References

1. Kneip C, Terlinden R, Beier H, Chen G. Investigations into the drug-drug interaction potential of tapentadol in human liver microsomes and fresh human hepatocytes. Drug Metab Lett. 2008; 2(1):67-75. PMID: 19356073.
2. Hale M, Upmalis D, Okamoto A, Lange C, Rauschkolb C. Tolerability of tapentadol immediate release in patients with lower back pain or osteoarthritis of the hip or knee over 90 days: a randomized, double-blind study. Curr Med Res Opin. 2009; 25(5):1095-104. PMID: 19301989
3. Daniels S, Casson E, Stegmann JU, Oh C, Okamoto A, Rauschkolb C, Upmalis D. A randomized, double-blind, placebo-controlled phase 3 study of the relative efficacy and tolerability of tapentadol IR and oxycodone IR for acute pain. Curr Med Res Opin. 2009; 25(6):1551-61. PMID: 19445652.

4. Kleinert R, Lange C, Steup A, Black P, Goldberg J, Desjardins P. Single dose analgesic efficacy of tapentadol in postsurgical dental pain: the results of a randomized, double-blind, placebo-controlled study. Anesth Analg. 2008; 107(6):2048-55. PMID: 19020157.
Author Affiliations: University of Pittsburgh Medical Center, Pittsburgh, PA.

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc.


Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Rohtesh MS, Arnold RM. Tapentadol. Fast Facts and Concepts. XXXX 2010; 228. Available at: http://www.eperc.mcw.edu/fastfact/ff_228.htm.

#227 The Family Meeting: End of Life Goal Setting and Future Planning

FAST FACTS AND CONCEPTS #227

The Family Meeting: end of life Goal Setting and Future planning

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background End-of-life goal setting is a key palliative care skill, typically occurring as part of a family meeting (see Fast Facts #16, 65, 222-226). This Fast Fact discusses an approach to goal setting when the expected length of life is short.

Establishing patient-centered goals Here is an example of how to start the conversation (the patient should be given sufficient time to respond to each of these questions):

I/we have discussed your current condition and that time may be short. With that in mind –

• What are you hoping for now?
• What is important to you?
• What do you need to accomplish?
• Who do you need to see in the time that is left?

Common responses invoke family, home, and comfort; often surviving until a specific future family event/date or visit with a key family member is described as an important goal. Re-state your understanding: What I hear you saying is that you want to be home, comfortable, and survive until your daughter gives birth – you hope to meet your next grandchild. Note: if you believe the patient’s goal of survival to a specific event/date is not practical, it is important to say so and discuss alternative plans.

Recommend a care plan based on the goals Once the goal(s) is/are established, you can then review the patient’s current treatments (e.g. antibiotics, chemotherapy), monitoring (e.g. pulse oximetry), planned tests (e.g. colonoscopy), and medications (e.g. anti-hypertensives), and decide which will help meet, or not, the patient’s goals. Anything that will not help meet the goals should be discussed for potential discontinuation. Depending on the specific disease/patient condition, other issues that are naturally discussed at this point include:

• Future hospitalizations, ICU admissions, laboratory and radiology tests.
• Resuscitation orders/code status (see Fast Facts #23-24).
• Current/future use of blood products, antibiotics, artificial hydration/nutrition.
• If present, the potential continuation or stopping of dialysis or cardiac devices.
• Role of a second (or third) opinion.
• Exploration of experimental therapy.
• Exploration of treatment options the patient or family may bring into the conversation.
• Disposition options to best meet the goals (e.g. home hospice referral).

Note: There is no need to ask about each option as a yes/no question (Do you want blood products?). Based on what you know about the patient’s goals, make a recommendation about what should and should not be done in light of the patient’s goals, condition and prognosis. If you are unsure, you can explore the issue with the patient/family (Given that your dad wanted to get home as soon as possible and yet he was also willing to do easy things that might help him live longer, I am unsure whether it makes sense to stay in the hospital an extra day or two to finish the antibiotics. What do you think he would say?).

‘Long-shot’ goals If patients are going to pursue ‘long-shot’ or experimental therapy, perhaps even against the recommendation of the treating team, it is useful to ensure the following:

• Reinforce the team’s respect for the decision, and desire to make sure the treatment has the best possible chance of working.
• Simultaneously try to maximize quality of life in the present, including the best possible pain and symptom management and support.
• Encourage the patient and family to prepare in case treatment is not successful and the patient dies sooner rather than later. Useful language is to say, I’d encourage us all to hope for the best, but prepare for the worst.
• Reinforce that the team will not abandon the patient and family even if the decision is not what is being recommended.

Close the meeting Following this discussion, restate your understanding of the patient’s goals and agreed-upon next steps to meet those goals, invite and answer questions, and close the meeting.

Discussion & documentation Discuss the goals with key staff not in attendance (e.g. consulting physicians, patient’s nurse, discharge planner, primary care provider). Document the goals, preferably using a templated family meeting note (see Reference 1): who was present, what was discussed (e.g. treatment options, prognosis), what was decided, next steps.

Debriefing A useful step after every family meeting is to debrief the process – what went well, what could have been improved and, most importantly, addressing the emotional reaction and needs of the care team.

References

1. Clinical Tools. Center to Advance Palliative Care. Available at: http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/. Accessed August 4, 2009. Free registration required.

2. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: End of Life Goal Setting and Future Planning. Fast Facts and Concepts. February 2010; 227. Available at: http://www.eperc.mcw.edu/fastfact/ff_227.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

#226 Helping Surrogates Make Decisions

FAST FACTS AND CONCEPTS #226

Helping Surrogates Make decisions

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background Surrogate decision makers are often placed in the difficult position of making what feels to them as life or death decisions. This Fast Fact reviews an approach to help surrogates through the decision process when patients cannot participate in decision-making themselves.

Surrogate decision making The surrogate’s role is clearly to exercise “substituted judgment” – that is, to make decisions as the patient would make them using the patient’s values and preferences as previously expressed. The challenge was clearly expressed by the New Jersey Supreme Court in the Quinlan case: if (the patient) could wake up for 15 minutes, understand his current medical situation completely, and then had to go back into it, what would he tell us to do? In the case of children, surrogate decision makers (usually parents) are expected to make decisions that represent the child’s ‘best interests’; depending on the age and capacity of the child to participate in his/her own healthcare decision making, the applied ‘best interest’ judgment by the surrogate and healthcare providers may incorporate the patient’s values and preferences to the extent possible, or may be solely based on the decision maker’s interpretation of best interest. If there is conflict about what is in a child’s best interest, or in cases of developmentally disabled adults who have never had capacity, consultation from ethics and law may be appropriate, as the rules governing decision-making vary considerably.

Helping surrogates

1. Before making a recommendation, make sure there is a common understanding of the patient’s condition and prognosis. Following this, the next step is to try to understand the patient’s goals in light of these medical facts.

2. Bring the patient’s “voice” into the decision process even if he/she cannot participate directly: If your father were sitting here with us, what would he say? If available, share a copy of any advance care planning document with the surrogate. Realize that it is common for the surrogate never to have seen the document.

3. Whenever possible, frame the decision around the treatment goals (e.g. life prolongation, allowing a peaceful death) in light of the patient’s current condition, rather than focusing on very specific treatments (e.g. thoracentesis, antibiotics). The details of the medical plan should flow from the overall goals of care.

4. Do not make the surrogate feel that they are taking full responsibility for medical decisions, especially those which may result in the death of their loved one (We can do option a or b; what would like me to do?). Once you have a sense of the patient’s goals in light of his/her medical condition, offer to make a recommendation that reflects those goals. Note: Many families are looking for support and guidance from medical professionals, especially the physician. Given what you have told me about your mother, and what we know about her medical condition, I would recommend…. Start with what you are going to do to achieve the patient’s goals and then talk about what does not make sense given those goals. Remember, however, that some families may want information but not your recommendation. It is therefore important to offer your recommendation (Would it be helpful for me to say what medically makes the most sense, given what you’ve told me about your Dad?).

5. Remember that we are talking about the potential death of the surrogate’s loved one. Emotions – sadness, frustration and guilt – are normal. Use previously discussed emotion management skills to acknowledge, legitimize, empathize and support the family’s emotional response (see Fast Facts #29 and #224).

6. Do not argue over the facts; repeating the facts over and over again is not likely to be effective. When the surrogate says He is a fighter, acknowledge that he is and has really fought hard. The surrogate saying I want you to do everything is as much a sign of emotional desperation as it is a factual request. Respond with empathy: It seems this is really hard for you. If hope for a miracle is expressed, it is appropriate to acknowledge that you hope for an unancticipated recovery as well, but that a miracle is truly what it would take at this point.

7. Rather than reiterating what medicine cannot do, consider using “I wish” statements to keep you in touch with the surrogate’s feelings, while simultaneously expressing medicine’s limitations (I wish our medicines were more effective; I wish we had more medical treatment to offer than we do…).

8. Recognize the importance of time and support for surrogates to do their necessary grief-work. Offer counseling services, either informal through the work of a palliative care team, or more formal resources available at your institution. Bring together your clinical care team and strategize potential resources for support such as chaplaincy, social services, psychology, palliative care or ethics consultation.

Remember that time is your ally. The surrogate needs to process that their loved one is dying and conceptualize what life will be like without him or her. This grief work takes time and psychological support. Often, letting people think about what you have said and talking again over subsequent days provides them the space to do grief work. It also allows them to see for themselves that what you have advised is coming true (e.g. the patient is not getting better).

References

1. Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med. 1996; 125:763-769.
2. Quill TE, Arnold RM, Platt FW. "I wish things were different": Expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001; 135:551-555.
3. Fisher R, Ury W. Getting to Yes: Negotiating Agreement Without Giving In. Boston, MA: Houghton-Mifflin; 1981.
4. Quill TE, Arnold RM, Back A. Discussing treatment preferences in patients who want "everything". Ann Intern Med. 2009; 151:345-349.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. Helping Surrogates Make Decisions. Fast Facts and Concepts. February 2010; 226. Available at: http://www.eperc.mcw.edu/fastfact/ff_226.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

#225 The Family Meeting: Causes of Conflict

FAST FACTS AND CONCEPTS #225

THE FAMILY MEETING: causes of Conflict

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background When family meetings are conducted with the goal of helping a patient/family cope with a shift in goals from life-sustaining treatments to a more comfort focused approach, communication can break down. This Fast Fact reviews the common causes of conflict.

Recognizing Conflict When the patient/surrogates are not psychologically ready to accept the limits of medical interventions or the finality of the impending death, you will hear comments such as these: There must be some mistake; I know there are other treatments available; We want a second opinion; We believe in miracles; She is fighter, she will never give up; There must be something (medically) you can do. Health professionals may interpret these statements as ‘denial.’ But the term denial, by itself, is insufficient to help the clinician understand what is causing the impasse. Understanding the cause is essential in planning an effective strategy to move beyond the conflict to meet the needs of the patient and surrogates.

Information Gaps

• Inaccurate understanding of the patient’s medical condition (e.g. overly optimistic or pessimistic prognosis).
• Inconsistent information (One doctor tells us one thing and another something else.).
• Confusing information (e.g. use of medical jargon, multiple treatment options presented without a clear recommendation).
• Excessive information (well-meaning family/friends/clinicians providing information without full awareness of the problems).
• Genuine uncertainty (e.g., predicting functional outcome from a brain injury in its immediate aftermath may be impossible).
• Language/translation/cultural issues (We never tell someone they are dying in our culture.).

Treatment Goal Confusion

• Inconsistent treatments and unclear goals, often due to physician/patient/surrogate emotional issues (see below):
• Clinician initiated: We will keep your husband on blood pressure raising medicine but stop antibiotics.
• Family initiated: We want you to do CPR, but not intubate her.
• Differing priorities about disease-directed treatment and comfort-oriented treatment between clinicians and patient/family.
• Lack of clarity about goals when several things are going on simultaneously (advanced cancer, severe infection, respiratory failure – Isn’t the pneumonia potentially treatable?)

Emotions

• Grief (I don't know how I will live without him.)
• Fear/anxiety (I don't want to be responsible for ending my father's life. My family will be angry at me for doing this.)
• Guilt (I haven't visited my sister in 20 years. I should have been here for her.)
• Anger (My mother was very abusive, I've never forgiven her; you are just giving up on her.)
• Hope (I’m still hoping and praying she can pull through this.)

Family/Team dynamics

• Patient/family conflicted within themselves; may want different things at different times
• Dysfunctional family system (family members unable to put the patient's needs/values/priorities above their own).
• Surrogate lack of ability (cognitive deficit, psychological/psychiatric trait/illness). In pediatrics, this can be conflict between what is in the best interest of a child vs. a caregiver or family.
• Consulting teams disagree about the optimal approach, putting the patient/family in the middle of the dispute.

Relationship between the Clinician and the Patient/Surrogate

• Lack of trust in the health care team/health care system.
• Past experiences where the patient has had a better outcome than predicted.
• Genuine value differences:
• Cultural/religious values concerning life, dying, and death.
• Clinician value of wanting to protect the patient from invasive, non-beneficial treatment while the family values wanting to prolong life no matter how much suffering it might entail.

All of these issues represent a degree of conflict and will need to be addressed before proceeding to set end-of-life goals. See Fast Facts #183,184 for additional discussion on managing conflict.

Debriefing Conflicts are stressful for all involved health professionals. It is helpful to debrief the process – what went well, what could have been improved, and – most importantly – addressing the emotional reaction and needs of the care team. See Fast Fact # 203 on managing clinician emotions.

References

1. Back AL, Arnold RM. Dealing with conflict in caring for the seriously ill. JAMA. 2005; 293:1374-1381.
2. Lazare A, Eisenthal S, Frank A. Clinician/Patient Relations II: Conflict and Negotiation. In: Lazare A, ed. Outpatient Psychiatry. Baltimore, MD: Williams and Wilkins; 1989.
3. Fisher R, Ury W. Getting to Yes: Negotiating Agreement Without Giving In. Boston, MA: Houghton-Mifflin; 1981.
4. Quill TE. Recognizing and adjusting to barriers in doctor-patient communication. Ann Intern Med. 1989; 111:51-57.

5. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: Causes of Conflict. Fast Facts and Concepts. January 2010; 225. Available at: http://www.eperc.mcw.edu/fastfact/ff_225.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

#224 Responding to Emotions in Family Meetings

FAST FACTS AND CONCEPTS #224

Responding TO EMOTION IN FAMILY MEETINGS

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background Family meetings are stressful events, often provoking strong emotional reactions. Fast Fact #29 presents a general outline on the topic of how clinicians can respond to emotions. The Fast Fact will provide a more detailed approach to emotions that arise during family meetings.

Consider your role. It is important to reflect on the role of clinicians in responding to patient/family emotions at the time life-altering information is shared. The goal is not to prevent a patient/family from having those emotions. Sadness, fear, anger, and loss are normal responses to unwelcome news. Instead your role is: 1) to maintain a trusting therapeutic relationship and safe/supportive environment that allows emotions to be expressed in a way that meets the patient’s/family’s needs; and 2) not to worsen the experience for the patient/family by ignoring or delegitimizing their responses, or confusing them with medical information when they are not ready to hear it. Recognize that most families find clinicians’ expressions of empathy tremendously supportive and these are associated with family satisfaction.

Acknowledge that emotion is being expressed. If you have a good sense of what the emotion is, then it is useful to name it. If not, using more general language is preferable.

• I can see this is really affecting you.

• This information is very upsetting.

Legitimize the appropriateness and normalcy of the reaction. Medical professionals are in a powerful position to help patients and families feel that strong emotions under these circumstances are normal and to be expected.

• Anyone receiving this news would feel devastated.

• It is completely expected to be very distressed by this kind of news.

Explore more about what is underneath the emotion. It is tempting to try to limit the emotion, and be prematurely reassuring. But it is generally more helpful and ultimately more time-efficient to allow the patient and family to more deeply explore their feelings and reactions.

• Tell me what is the scariest (most difficult) part for you.

• Tell me more about that…. (Keep the exploration going until it is fully expressed and understood.)

Empathize (if you genuinely feel it). Empathy means being able to emotionally imagine what the patient is going through. Clinicians can initiate the prior responses (acknowledge, legitimize, explore) without having a clear feeling for the patient’s experience. These responses can be adequate in themselves. If the clinician cannot imagine the patient’s experience, he or she can still sensitively explore the experience and provide caring and support. But if you have a strong sense of what the patient is experiencing, it can be very therapeutic to express it.

• This seems really unfair.

• I can imagine that you might feel very disappointed.

Explore strengths/coping strategies. This may occur at this phase of the interview, or it may be postponed to a later phase when planning for next steps begins.

• In past circumstances, what has helped?

• How have you adapted to difficult circumstances in the past?

• What are you hoping for now?

References

1. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

2. Suchman AL, Markakis K, Beckman HB, Frankel R. A model of empathic communication in the medical interview. JAMA. 1997; 277:678-682.

3. Hardee JT. An overview of empathy. The Permanente Journal. 2003; 7(online). Available at: http://xnet.kp.org/permanentejournal/fall03/cpc.html. Accessed August 5, 2009.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. Responding to Emotions in Family Meetings. Fast Facts and Concepts. January 2010; 224. Available at: http://www.eperc.mcw.edu/fastfact/ff_224.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

#223 The Family Meeting: Starting the Conversation

FAST FACTS AND CONCEPTS #223

THE FAMILY MEETING: Starting the conversation

David E Weissman MD, Timothy Quill MD, and Robert M Arnold MD

Background Fast Fact #16 gives a concise overview of running a family meeting. Fast Fact #222 provides a list of preparatory steps in planning for a family meeting to discuss end-of-life goals; this Fast Fact reviews the early steps of the actual meeting.

1. Introductions & setting goals for the meeting

• The meeting leader begins the meeting by introducing him or herself, and suggesting that each person present (medical team and family/community) introduce themselves including their relationship to the patient.
• The meeting leader should summarize the meeting goals (e.g. We are here to discuss next steps in the care of Mr. Jones) and ask the family to confirm these goals and/or add other agenda items.
• Note: if you do not know the patient or family well, take a moment to build relationship. Ask a non-medical question such as I am just getting to know you. I had a chance to look at your chart and learn about your medical condition but it does not say much about your life before you got sick. Can you tell us about the things you liked to do before you got sick? Similarly, if the patient is not able to participate in the meeting, ask family to describe the patient prior to his becoming ill: As we get started, can you describe what Mr. Jones was like before he became ill?

2. Determine what the patient/family already knows This step is essential as it guides you in providing a synthesis of the medical information (see below). Always invite the patient and all family members to provide their understanding of the medical information. Examples of opening lines:

• Tell me what the doctors have told you about your condition?
• Can you describe for me your sense of how things are going?
• For patients who have been declining from a chronic illness, you can ask: Tell me about the past 3-6 months: what types of changes have you noted? The patient or family will typically describe changes in terms of function (physical or cognitive) and quality of life.

3. The Medical Review Once you know what the patient/family understands, you are in a good position to confirm their understanding, or provide new information/correct misunderstandings. First, ask if you can bring them up-to-date about what is going on; asking shows politeness and also signals that they should attend to what you are trying to say. The clinician most closely aligned with the patient’s ongoing treatment should begin this discussion, supplemented with information from consulting services if relevant. Do not provide information using medical jargon or in an organ system approach (e.g. The creatinine is improving, but there is a new pleural effusion and the heart rate has become irregular). A more patient-centered approach is to provide a succinct summary of the current condition, without any medical jargon, focusing on the issues of most importance, which are usually function/quality/time. Give a ‘bottom-line’ statement: ‘getting worse,’ ‘not going to improve,’ ‘dying and time is likely very short.’

• The worsening weakness and pain you describe is from the cancer which is growing despite the chemotherapy.
• You are telling me that despite the recent hospitalization, you are not able to do as much around the house; unfortunately your lung disease is getting worse despite all our best treatments.
• Despite our best efforts, your wife’s brain injury from the car crash is getting worse. She can no longer stay awake or move her arms/legs.

Using the ‘D word’ if relevant: when a patient is clearly deteriorating and death is likely within the next days to weeks, or even a few months, it is appropriate to use the word dying in the conversation. Both patients and surrogates find that saying the word dying, if done compassionately, is helpful in clearing what is often a confusing and frightening situation. I’m afraid we have run out of options to shrink the cancer. Based on your declining function, I believe you are dying.

4. Silence Whether or not you use the word dying, when you have presented bad news (such as information about disease progression), the next step is for you to allow silence, and let the family/patient respond. In truth, no matter what you might imagine the response from the patient/family to be once the bad news is delivered, you really cannot predict their emotional reaction (e.g. relief, anxiety, anger, regret, fear). This silence can be uncomfortable; resist the urge to fill it with more facts as they will not be heard. Not all patients/families express emotions at this point and instead respond practically (Well, what happens next then?). This is fine, but you need to wait, silently, to see what response the patient/family demonstrates. In addition, even practical questions have underlying emotions (Are you sure? Or – There must be something you can do?). It is important to respond to both the factual aspect of the question (Yes I am sure. Or – There are no more effective treatments available.), as well as the emotional level (I wish I had better news for you. Or – I wish our treatments worked better than they do.).

When the patient/surrogates openly acknowledge that current treatments are no longer effective, that death is coming, they will generally ask one or all of the following questions: How long? What will happen? Will there be suffering? What do we do now? Your response at this point should be to address prognosis in terms of time, function, and symptoms, as best you can (see Fast Facts #13,141,143,149,150). This will answer the first two questions; the last questions will require more discussion of patient-centered goals (see Fast Fact #227).

References

1. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

2. Quill TE, Townsend P. Bad news: delivery, dialogue and dilemmas. Arch Intern Med. 1991; 151:463-468.

3. Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001; 29(2 Suppl):N26-33.

4. Lautrette A, Ciroldi M, Ksibi H, Azoulay E. End-of-life family conferences: rooted in the evidence. Crit Care Med. 2006; 34(11):S364-S372.

5. King DA, Quill T. Working with families in palliative care: one size does not fit all. J Pall Med. 2006; 9:704-715.

6. Quill TE, Arnold RM, Platt FW. "I wish things were different": Expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001; 135:551-555.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: Starting the Conversation. Fast Facts and Concepts. December 2009; 223. Available at: http://www.eperc.mcw.edu/fastfact/ff_223.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.