End of Life Care Communication and Advance Illness Care Planning Gideon Sughrue MD May 18, 2013
Objectives End of life Care Communication Describe Palliative Care Place in therapy What is hospice? What is advance care planning? Facts regarding IV fluids and artificial nutrition at the end of life? Differences between Advance Directive and POLST? CA AB 2747 February 2008
Palliative Care Consult Case 87 y/o M retired lawyer and District Court Judge Up until 3 months ago was still teaching at a local law school Had Acute STEMI hospitalized found to have severe diffuse CAD only option medical management Intermittent Angina at rest, increased with movement
Continued During last hospitalization also had sepsis with prolonged course of intubation Resulting severe CKD 4 GFR 25 3 months later now with worsening respiratory status Attending tried to discuss goals of care over the week since the during his admission, but patient not interested Echo showed combined CHF EF 20%, moderate LVH and severe AS Recurrent Angina, disabling dyspnea at rest
Case presentation Patient stated that he was born on the birth date of Jesus Christ Since a young man he though he would live forever secretly Family requested palliative care meeting they had talked with attending, were concerned about course of illness What would you do?
What is Palliative Care A) Caring people who sympathize for dying people? B) Medical care for people in the last weeks of their life? C) Palliative care is relieving or soothing the symptoms of a disease or disorder. D) Hospice.
Palliative Care is Palliative care is defined as relieving or soothing the symptoms of a disease or disorder is for people of any age, and at any stage in an illness, whether that illness is curable, chronic or lifethreatening palliative care may actually help you recover from your illness by relieving symptoms such as pain, anxiety or loss of appetite, as you undergo sometimesdifficult medical treatments or procedures
Palliative Care place in therapy
More Than Comfort! Randomized trial of 151 patient with lung cancer Randomized to usual care vs usual PLUS early (integrated) palliative care With early palliative care had: Higher quality of life scores (p=0.003) Fewer Depressive symptoms (16% vs 38% P=0.01) Less aggressive EOL 33% vs 54% P=0.05 Longer survival (11.6 vs 8.9 months P= 0.02) TemelJS et al NEJM 2010
End of life Discussions Do Change Care Decisions! Studies show EOL discussion associated with NO increase in patient depression or worry Better patient and caregiver quality of life Decreased Ventilation, CPR, ICU admissions and costs Earlier Hospice admissions Less care giver depression More aggressive therapies associated with: NO difference in mortality Worse patient quality of life Wright AA et al JAMA Zhang et al Arch Intern Med 2009
Palliative Care Reduces Readmissions KP matched case-control study of 3380 hospitalized patients IPC vs usual care Results 40% less hospital readmissions (0.4 vs 0.67 p<0.0001) 56% less ICU readmissions (0.11% vs 0.25% p<0.0001) 24% lower ER admissions (0.44 vs0.58 p<0.0001) 51 % higher hospice admissions (0.44 vs 0.29 p<0.0001) 55% higher average hospice LOS (27.5 vs 17.0 p<0.0001) Bellow J et al. Pending Publication 2011
Final Chapter: Californians' Attitudes and Experiences with Death and Dying Statewide survey of 1,669 adult Californians, including 393 respondents - lost a loved one in the past year. most important factors: 67% extremely important not being a financial burden being comfortable and without pain (66%)
Continued Two-thirds of Californians say they would prefer a natural death if they were severely ill 60% say that making sure their family is not burdened by tough decisions about their care is extremely important. However, 56% of Californians have not communicated their end-of-life decisions
Continued 80% definitely or probably want to discuss doctor about end-of-life wishes 7% have had a doctor speak with them about it 80% - good idea for doctors to be paid - discussions 70% would prefer to die at home, however in 2009 32% - deaths occurred at home 42% in a hospital 18% in a nursing home
Palliative Care Patient cared for his wife who died on hospice with leukemia 7 years earlier Stated in bad situation best experience possible He wished secretly that she had not given up Wished that she had lived one more day for a possible cure
Continued At present after discussing the chronic progressive natural course of his illness in a logical manner He stated that through his faith in god He wanted to continue pursuit of curative treatment Was afraid of suffering and stated I want to avoid suffering if at all possible.
How would you respond? A) Don t call us we will call you? B) That is a wise decision you will live forever! C) Can t you see what you are doing to your children? D) We respect your decision, if you need us in the future please call us or have your family call us. E) How can such a smart man make such a stupid decision?
Case Continued After his 4 th hospital visit, 4 days on Bipap Came into to see his PCP wanted to complete an advance directive Named his daughter and son DPOA and Back up DPOA Advance Directive requested full invasive treatment Unless he was terminal or on life support for more than a week and not improving, especially if not aware of surroundings Than transition to comfort care and hospice.
Case Continue Despite understanding that he was maxed out on medical treatment for CAD Felt that quality of life was still good, that is why he wanted full invasive treatment not a burden to him at present Wanted to consider using Roxanol SL with Nitro SL as needed for Chest Pain and/or dyspnea
What is hospice? A) A place people go to be killed? B) A service that takes care of people in nursing homes and pays for their stays? C) A medicare funded plan for patients with an expected life prognosis of less than 6 months who want to focus their care on comfort and dignity D) Only for patients who are DNR?
Hospice Continued Medicare funded plan where patients pay no copay usually or via private insurance Funded by the government for patients with Expected prognosis of less than 6 months left to live Hospice team made of MD, RN, MSW, Chaplain on call 24/7
Hospice Focus on providing comfort for Physical pain Emotional pain Spiritual pain Bring the care to the patient Home Board and care Nursing home
Hospice Patient or family/friends responsible for providing or paying for basic care that patient requires For feeding and bathing basic tasks of daily living Hospice pays for the staff time Medications and treatments that focus on the patients hospice diagnosis and comfort Durable medical equipment needed related to the hospice diagnosis Most hospices cover all service without copays AKA 100% free
Hospice coverage continued If a patient elects hospice they can.. Elect to dis-enroll without any cost to them Chose to re-enroll when appropriate ( limited number of times) Transfer care to another hospice agency Graduate hospice if health improves No charge to patient
What is Advance Care Planning (ACP) Planning for future medical care in the event patient is unable to make own decisions Needs to be updated regularly Empowers patient to explore own values, goals Determine proxy decision-maker It is a process, not an event Proper documentation avoids confusion & conflict
Clarify Goals, Treatment Priorities Goals guide care Assess priorities to develop initial plan of care Review with any change in health status advancing illness setting of care treatment preferences
Fostering Advance Directive Discussions Make it routine This is something I discuss with all of my patients Elicit important values What makes life worth living for you? What makes life NOT worth living for you? Address a limited number of issues CPR, Artificial nutrition and hydration Complete documentation Review/update documents regularly
How to start the discussion! Build a relationship! Invest in open communication! Based on our visit today how do you think your health is overall? Do you have an advanced directive? Have you discussed with your family and/or friends what makes life worth living? Have you been hospitalized before on life support, ie ever intubated, what was that like?
Who here completes AD with their patients? How do you introduce your patients to the concept of an advance directive? Do they overall appreciate it? Any other insights? Who here is familiar with Kaiser Permanente Life Care Planning?
Kaiser Permanente Life Care Planning! Currently in different phases of being rolled out in KFH/TPMG Evidence Based system based on Lutheran Gunderson model of advance care planning Step #1 Advance Care Planning for all patients Step #2 Disease specific discussion for patients with chronic illness but controlled ie DM 2, ESRD on HD, COPD, CHF, Dementia
Kaiser Permanente Life Care Planning Step 3 POLST For patients with an expected life prognosis less than 1 year For patients who want a natural death - ie DaNR Want documentation of no artificial nutrition Question can a patient be DaNR and Full invasive treatment? What would that look like?
POLST
Consider Using - Kaiser Advance Care Planning Videos Kaiser Advance care planning (ACP) decisions videos - Care Management Institute
How to improve communication Examples: Help me to understand what you understand about your illness? What have your doctor s told you? How much have you been thinking about what you would do if things got to this point?
More questions? Have you seen any of your family or friends die slowly in the ICU? If you had a progressive irreversible illness such as a heart attack, stroke, or cancer and you could not care for yourself, or unable to talk or feed yourself? If you were dying would you want to die on life support machines unable to talk with your family, or have artificial nutrition tubes in your stomach?
Know the facts! Artificial nutrition: Promotes suffering: by causing aspiration pneumonia, pain, bleeding and infection ie pneumoperitoneum Patient agitation when restraints are used Results in edema for some terminally ill patients Is not indicated for patients that do not appear to feel hungry Is not indicated for patients with end stage dementia Artificially prolongs the dying process and leads to further suffering! Fast Fact #10 Tube Feed or Not Tube Feed?, 2nd edauthor(s): James Hallenbeck MD Current version re-copy-edited March 2009. EPERC Medical College of Wisconsin
Facts: IV fluids at the end of life: Can cause suffering due to pulmonary edema Peripheral edema IV fluid may slow the dying process Prevents ketone body production - natural defense mechanism during death to reduce further suffering #133 Non-Oral Hydration in Palliative Care Fast facts Author(s): Robin Fainsinger MD, Medical College of Wisconsin
Practice Make a goal to do have one discussion per week! Next month 2 discussions per week. Ask for advice, or mentoring? Physicians Helping Physicians?
Advance Directive vs. POLST Advance Directive For every adult Requires decisions about myriad future treatments Clear statement of preferences POLST For the seriously ill Decision among presented options Checking of preferred boxes Needs to be retrieved Requires interpretation Stays with the patient Actionable medical order Fagerlin & Schneider. Enough: The Failure of the Living Will. Hastings Center Report 2004;34:30-42.
CA AB 2747 February 2008 442.5. When an attending physician makes a diagnosis that a patient has a terminal illness or makes a prognosis that a patient has less than one year to live, the physician, or in the case of a patient in a health facility, as defined in Section 1250, the health facility, shall provide the patient with the opportunity to receive comprehensive information and counseling regarding all legal end-of-life care options.
Continued Hospice care at home or in a health care setting. A prognosis with and without the continuation of curative treatment. The patient's right to refusal or withdrawal from life-sustaining treatment.
Take Home Advance care communication, planning and documentation can relieve Patient suffering Family suffering Medical staff suffering Know the facts regarding medical interventions and treatments http://www.eperc.mcw.edu/eperc/fastfacts andconcepts - Fast Facts for quick concise palliative care recommendations.