End of Life Care

1. End of Life Care Brooke Decker, M.D. Friday August 28th, 2009

2. Learning Objectives To Familiarize Housestaff with Limitations in Care - definitions and policies at UH and VA. Identify appropriate discussant for discussions regarding limitations of care. Understand key points to touch on in a complete code status discussion. Provide education on Palliative Care and Hospice Care options and encourage early discussion with patients and families.

3. You arrive at 7:45 am and your intern says: �Mr. K died last night. I declared him dead. I�ve never done that before.� Mr. K was DNR-CC and was expected to die. End of Life is a reality of Internal Medicine training. We have been described as �the fleas� or the last to desert the dying patients. (Surgery signed off a few admissions ago.) You can make a difference in your patient and family�s experience if you are sensitive to end of life issues.

4. I want you to keep my grandma alive! DNR status conversations can be leading. �Before writing an order, inform the patient[/surrogate] about the relevant treatment options, offering your medical recommendations.� -- UH policy �Most people in this position would want to be� DNAR/Not maintained on artificial ventilation indefinitely..� �Resuscitation is usually unsuccessful, only 15% of patients who suffer an arrest ever leave the hospital.� �Patients do not have the right to treatments which are considered to be medically inappropriate or futile.� -- UH Policy

5. What is DNR/DNAR/Comfort Care? The patient Self-Determination Act (PSDA) Passed by congress in 1990 Requires hospitals, nursing homes, home health, etc. to provide pts with information about advance health care directives on admission/initiation of care. (doesn�t apply to individual doctors) Patients have the right to facilitate their own healthcare decisions, accept or refuse treatment and make advance directives.

6. What is DNR/DNAR/Comfort Care?(federal definitions) DNR Comfort Care-Arrest: Resuscitation and life-support interventions are to be provided until and unless the patient suffers cardiac or respiratory arrest. At that time, all resuscitative and life-support interventions will be stopped. DNR Comfort Care: All resuscitation and life-support interventions are to be withheld at all times, under any conditions. Can be suspended for surgery/anesthesia procedures with patients consent.

7. UH Policy �University Hospitals (UH) provides high-quality patient care with the objective of saving and sustaining life. This commitment involves recognition that initiation or continuation of treatment may not constitute optimum care when the burdens of such treatment outweigh its benefits to the patient and/or the treatment is futile and provides no meaningful benefit.� New terminology to reduce confusion: DNAR, DNAR + added limitations

8. UH Policy - DNAR Do Not Attempt Resuscitation (DNAR): In the event of a cardiac, pulmonary, or cardiopulmonary arrest, no CPR will be initiated, including defibrillation, intubation, mechanical ventilation, or administration of emergency medications or fluids. This order also requires a note in the chart, indicating discussion with the patient and/or surrogate(s). No other treatments will be limited. This order DOES NOT preclude use of other available technologies and pharmacologic support in an effort to prevent an arrest, but should an arrest occur, no further interventions are to be implemented.

9. UH Policy - DNAR + Added Limitations �DNAR + Added Limitations: this order specifies that in the event of an arrest, no resuscitative efforts (e.g. CPR, chest compression, defibrillation, initiation of intubation, or mechanical ventilation) should be implemented; IN ADDITION, other specified life-sustaining interventions are to be withheld at all times. For example, a DNAR + Added Limitations order should be used if a decision has been made to withhold CPR AND to withhold other measures (such as vasopressors, dialysis, or antibiotics) that would interfere with the natural dying process or a peaceful death. The specific additional measures to be withheld must be indicated on the order form in the medical record�

10. VA Policy ��it will continue to be VA policy that, except where the medical record contains a DNR order or resuscitation would be futile or useless, cardiopulmonary resuscitation (CPR) will be administered to every patient who sustains a cardiopulmonary arrest�� �� It is acknowledged that, in the exercise of the sound medical judgment of the licensed physician, instruction may appropriately be given to withhold or discontinue resuscitative efforts of a patient who has experienced an arrest. Such cases would involve patients for whom resuscitative efforts would be ineffective or contrary to the patient�s wishes and interests��

11. VA Policy ��If an incompetent patient has executed a declaration under VHA Handbook 1004.2 during a period of competency, and that declaration specifies that resuscitation shall be withheld in circumstances which include cases involving cardiopulmonary arrest, a DNR order may be entered, notwithstanding the absence of consent by the patient's representative�� ��"Do Not Resuscitate" does not mean that the medical staff will take any affirmative steps to hasten the patient's death. All parties, including all levels of care providers, shall provide all forms of appropriate therapeutic care, and shall strive to improve the range of acceptable therapeutic options made available to the dying patient.�

12. VA Policy - A note on House Officer DNR orders �� The physician who is responsible for determining the propriety of a DNR order in a particular case is the senior attending or staff physician, not a house officer.� �After considering multiple comments from the field, the Ethics Center has concluded that it is reasonable and ethically justifiable to permit residents to enter DNR orders when the attending is not readily available, provided that the resident first: obtains consent from the patient or the patient�s authorized surrogate,* discusses the order with the attending responsible for the patient�s care, obtains the attending physician�s concurrence, and documents the conversation with the attending in the patient�s medical record.� �In addition, the attending physician must countersign the progress note documenting the conversation and rewrite the DNR order at the earliest opportunity (in all cases within 24 hours).�

13. What is DNR/DNAR/Comfort Care? Comfort Care Goal is to provide comfort, not life. Narcotics can be escalated to control pain even when doing so may negatively impact breathing/survival. Antibiotics can be continued if the infection is a source of pain. (However, they may be stopped if they are a greater source of discomfort. Example: maintaining the iv.) Fluids are generally not continued as they do not provide comfort. Some procedures are appropriate such as venting gastrotomy tubes, tracheostomy as long as they provide the patient with a comfort oriented goal, ie: to continue to eat, to allow death to occur at home/outside of ICU.

14. What about withdrawing care? �There is no ethical distinction between withholding a medical treatment and withdrawing treatment that has been initiated. Although it may be psychologically more difficult, it is ethically acceptable to withdraw a treatment if it is no longer desired by the patient or is no longer providing benefit the patient� --UH Policy Therapies that are only a �bridge� should be removed when there is no expectation that the condition will improve - for example, in a ventilated pt who has no treatment options, continuing to ventilate is not going to change the outcome.

15. What about withdrawing care? Educate the family, many family members have concerns that they are �killing� their loved one when they decide to �pull the plug�. Precise communication is necessary such as ��the disease will continue to progress and result in the death of your loved one.� Explain things in detail. It will calm you and reassure them - they may have questions about the machines/monitors, breathing of their loved one and feel like it�s a dumb question. Family may choose to be there or not. Respect their decision, offer to be there with them. People handle grief differently.

17. When to get a code status On admission to the hospital. As part of your routine Admission H&P It flows easily if you include it with other invasive/personal questions. �Have you made any decisions about what you would and would not want done here in the hospital?� �Do you have a living will or Portable DNR?� �The default for your stay here in the hospital is for the code team to attempt a resuscitation if you were to die in your sleep. Is that what you would want?�

18. When to get a code status In Clinic �I recommend you discuss with your family your wishes.� �If you are interested, we can fill out a portable DNR.� In subspecialty clinics, especially when a terminal illness is diagnosed.

19. What should an advance directives conversation include? Identification of surrogate decision-makers Discussion of values and goals of care Information about likely success of therapies (In-hospital arrest results in approx 15% survival to discharge.) Treatment preferences in a variety of situations Feeding tube, length of time on ventilator/willingness to undergo tracheostomy Elicit from patient states he/she would consider worse than death.

20. Who do you ask about advance directives? (in order of preference) The competent patient. Make every effort to make family is aware (they don�t have to agree!) These decisions stand even when the patient becomes unresponsive or lacking capacity. Even if the family disagrees. DOCUMENT! The designated medical power of attorney (Ask to see the paperwork, copy it for the chart.) Financial power of attorney doesn�t count. Guardian of person �Next of Kin� --> spouse, child, parent, sibling, grandparent, and grandchild, in that order. �Close friend� If none at UH -> 2 physicians. At VA -> Medical Director or Chief of Staff. If there is any doubt, concern, anything strange at all - Call Ethics. They can assist you in finding an appropriate decision-maker and back you up legally!

21. End of Life Care Most people express the desire to die at home. Despite this most people die in the hospital. More than half of those people are in the ICU within three days of their death. One third spend at least 10 days in the ICU during their final hospitalization. Nationally, nearly 32 percent of dying patients had hospice care during the last 6 months of life, for an average of 11.6 days.

22. What is Palliative Care? Emphasis is on treating symptoms, not necessarily curing disease. Relieving pain Relieving constipation Providing comfort The Palliative Care team can assist with patients who are not yet ready to be DNAR. They can help control pain and assist with end of life discussions. They are a fantastic resource if you have a question/unclear situation.

23. What is Hospice?

25. Benefits of Hospice Better quality of life - patient and care-giver. Lower risk of major depressive disorder in bereaved caregivers. Allows many patients to go home.

26. Hospice of the Western Reserve Provides palliative end-of-life care, caregiver support, and bereavement services throughout Northern Ohio. Home Care Working closely with the patient and his or her family, the hospice team develops a care plan that focuses on the patient�s well being and the need for pain management and symptom control. The plan outlines the medical equipment, tests, procedures, medication and treatment necessary to provide high quality comfort care. A member of the hospice team makes regular visits to assess the patient and provide additional care or other services. Extended Care If there is a brief, acute episode that requires additional care to manage pain or acute medical symptoms, nursing care can be provided on a 24-hour continuous basis to maintain the patient at home. Inpatient Care Patients may be admitted for pain to Hospice House or to a participating hospital inpatient hospice care unit. Respite Care Up to five days of respite care are offered to caregivers who need a break from the many demands of providing daily care.

27. How to find a hospice National Hospice and Palliative Care Organization: http://nhpco.org/

28. Thrown under the Political Bus Section 1233 of H.R. 3200 "would require Medicare to pay for some end-of-life planning counseling sessions with a health care practitioner.� Modifying section 1861(s)2 of the Social Security Act which defines what services Medicare will pay for. Sarah Palin interpreted this as �mandatory death panels� and posted it to her facebook making �end of life� care a politically hot and touchy topic.

29. References National Hospice and Palliative Care Organization http://nhpco.org/ VHA handbook 1004.3 Do Not Resuscitate(DNR) Protocols within the Department of Veterans Affairs. 2002, updated 2007. VHA handbook 1004.1 Informed Consent UH Policies and Procedures: CP-34 Limitation of Life-sustaining Treatment. Teres, D. Trends from the United States with the end of life decisions in the intensive care unit. Intensive Care Med. 1993;196):316-22. Luce, JM, White, DB. A History of Ethics and Law in the Intensive Care Unit. Crit Care Clin 25 (2009) 221-237. Schroder, C et al. Educating Medical Residents in End-of-Life Care: Insights from a Multicenter Survey. J of Palliative Med, Vol 12(5) 2009. 459-470. Levy, CR et al. Quality of Dying and Death in Two Medical ICUs. Chest 2005; 127; 1775-1783. Difficulties of residents in training in end-of life care. A qualitative study. Palliative Med. 2009; 23: 59-65. Chang, SH, Huang, CH, Shih, CL, Lee, CC, Chang, WT, Chen, YT et al. Who Survives cardiac arrest in the intensive care units? Of Crit Care (2009) 24, 408-414. Patrick and J. Randall Curtis Cari R. Levy, E. Wesley Ely, Kate Payne, Ruth A. Engelberg, Donald L. Quality of Dying and Death in Two Medical ICUs. Chest 2005; 127; 1775-1783. AA Wright; B Zhang; A Ray; JW Mack, MD, MPH; E Trice; T Balboni et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment JAMA. 2008;300(14):1665-1673 Factcheck.org

30. Dylan Thomas - Refusal to Mourn the Death, By Fire, Of a Child in London Never until the mankind making Bird beast and flower Fathering and all humbling darkness Tells with silence the last light breaking And the still hour Is come of the sea tumbling in harness And I must enter again the round Zion of the water bead And the synagogue of the ear of corn Shall I let pray the shadow of a sound Or sow my salt seed In the least valley of sackcloth to mourn The majesty and burning of the child's death. I shall not murder The mankind of her going with a grave truth Nor blaspheme down the stations of the breath With any further Elegy of innocence and youth. Deep with the first dead lies London's daughter, Robed in the long friends, The grains beyond age, the dark veins of her mother, Secret by the unmourning water Of the riding Thames. After the first death, there is no other.