9/4/2018. Prognosis: The Why, How, When, What and Where of Prognostication. Financial Disclosures. Thank You. None

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1 Prognosis: The Why, How, When, What and Where of Prognostication Carl Grey, MD Director, Palliative Care at Financial Disclosures None Thank You Dr. Erin Scott (Mass General) Dr. Jennifer Gabbard (Wake Forest) CAPC 1

2 Objectives Know that prognosis can change perspective Be aware of the eprognosis online tool Know key conversational elements for discussing prognosis Function vs time Respond to emotion before cognition Appreciate the basics of Prognostic Awareness The Goal of Serious Illness Conversation Encouraging an adaptive transformation Prognostic Awareness Goals and Values Medical Decision Making ACP Coping From Why Prognosticate? 2

3 How will we die? <20% of us will die suddenly Sudden Death Acute illness or trauma >80% of us will die from a chronic illness Heart Disease (CHF) Cancer COPD Dementia The purpose of Prognosticating is not to be right. It is to give people a sense of what could happen to help them plan Why Prognosticate Why Prognosticate? A case example 77 year old female with Congestive Heart Failure, NYHA class IV is seeing you in clinic. She has had one hospitalization in the last year for her CHF. She weighs 80 kg and she is on lasix, but she has had great difficulty in tolerating a statin. She is often short of breath at rest. Her EF is 30%. Her Hb is She has a lymphocyte count of 20. Her sodium is 130. She has an ICD. She shows you the paper she received in the mail saying she is due for her mammogram. What do you think? Does she need one? 3

4 Choosing Wisely: Consensus Statement Don t recommend screening for breast, colorectal, prostate, or lung cancer without considering life expectancy and the risk of testing, overdiagnosis, and overtreatment. Choosing Wisely is an initiative of the ABIM Foundation in partnership with Consumer Reports that seeks to advance a national dialogue on avoiding wasteful or unnecessary medical tests, treatments and procedures. More than 70 specialty societies have identified commonly used tests or procedures within their specialties that are possibly overused. Why Prognositicate? Shared Decision-Making An Approach to Advance Care Planning Process of communication bx patient and clinician based on patient s overall condition after patient describes values and preferences Physician/NP presents diagnosis, prognosis, and treatment alternatives with their benefits and risks Reach agreement on a specific course of treatment Each participant better understands the relevant factors Considered the pinnacle of health care decision-making Barry MJ et al. Shared decision making: The pinnacle of patient-centered care. New Engl J Med 366: , 2012 Why Prognosticate? Facilitates Shared Decision Making Leads to important discussions about goals and values Physicians may change priorities of treatments Patients may change priorities 4

5 Giving a prognosis can change perspective If I knew how much time I have, I may change the way I live Purpose is not to be right, but to help people plan for what could happen Perspective matters Laura Carstensen, Stanford, studied priorities for people age Young people aspire to achieve, to get, to have. Focus on Doing Will delay gratification Focus on the future As we age and become fragile, we focus on a narrower group of friends and family Focus on intimacy, deeper relationships Being connected to a few things that make us feel purposeful Focus on the present. Focus on being Perspective matters It s not just about age What if medical technology allowed for us to live 20 years longer? The older preferences shifted to young signature What if you were going to move very far away from your family? Young preferences shifted to the old signature 5

6 Perspective matters When people feel death might be near, their priorities shift During 9/11, Carstensen s research showed young people all shifted priorities to the older signature Wanted to be with family, focus on a few people, focus on present Three months later, priorities shifted back to the young signature Compared young healthy males to young men dying of AIDS Healthy and young valued time with people that could help them succeed Young men with significant illness had the preferences of an older adult How do we Prognosticate? Population Averages Clinical Judgment Specific criteria and prognostic indices for disease processes Population Averages: Heterogeneity in Life Expectancy for People of Similar Ages Walter LC. JAMA 2001;285:

7 Shortcomings of Clinical Predications Tend to overestimate patient s survival by a factor of 3-5 Tend to be more accurate for very short-term prognosis than long-term prognosis Influenced by relationships The length of doctor patient relationships increases the odds of making an erroneous prediction. Christakis NA, Lamont EB. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. Bmj. 2000;320(7233): What is a Prognostic Index? Definition: A clinical tool that quantifies the contributions that various components of the history, physical exam, and laboratory findings make towards a diagnosis, prognosis, or likely response to treatment. McGinn, JAMA, 2000 Palliative Performance Scale Shown to be both valid and useful for a broad range of palliative care patients: advanced cancer diagnoses or life-threatening non-cancer diagnoses in clinics, hospitals, or hospices. Developed in 119 palliative care patients at home (73% with PPS rating between 40-70%) and 213 patients admitted to a hospice unit (83% with PPS rating between 20-50% on admission) in Victoria, British Columbia. Externally validated in a prospective observational study on survival prediction in 958 patients who received palliative care consult at a hospital in Edmonton, Alberta, Canada (median age of 73 years, 50.3% male, median survival of 35 days). Anderson F, Downing GM, Hill J, Casorso L, Lerch N. Palliative Performance scale (PPS): a new tool. J Pall Care, 12(1): 5-11 Tarumi Y, J Pain & Symp. 2011; 42(3):

8 eprognosis Smith et al. from UCSF developed a website repository of validated geriatric prognostic indices called eprognosis. These could help clinicians improve prediction of life expectancy, resulting in improved prevention decisions. eprognosis Combines: Lee Index Population: Community-dwelling adults aged 50 and over Outcome: All cause 4 year mortality Age, Comorbidities and function. With Schonberg Index 5 year mortality and adds Hospitalization and Perceived Health Yourman LC, Lee SJ, Schonberg MA, Widera EW, Smith AK. Prognostic indices for older adults: a systematic review. Jama. 2012;307(2):

9 eprognosis example Patient example: 72 year old male with metastatic cancer who is in the hospital for pain control. He still works, and does not need help with any of his ADLs or his IADLs. eprognosis with Palliative Peformance Scale Another patient: The same 72 year old patient with the same stage IV cancer, but now he is mainly sitting or lying down during the day, he is unable to do any work, he needs considerable assistance with his activities at home, the amount he eats is sometimes normal, and sometimes reduced, and he has no problems with his level of consciousness. Cancer Prognosis: Who needs a discussion Anyone not going to be able to be cured from their cancer Clinical signs/ symptoms Dyspnea, dysphagia, anorexia, confuson Lab values: lymphocyte count, albumin, sodium ECOG (Eastern Cooperative Oncology Group) 3:Capable of only limited self care, confined to bed or chair more than 50% of waking hours 4:Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair Karnofsky <40 (disabled, requiring special care and assistance) or ECOG over 3, median survival 3 months 9

10 Cancer prognosis: Helpful markers, but still moving targets with advances in medicine Malignant hypercalcemia: 8 weeks (except newly diagnosed breast CA and MM) Malignant pericardial effusion: 8 weeks Carcinomatous meningitis: 8 weeks Multiple brain mets: 1-2 mo no trx, 2 to 4 months with steroids, 6 to 8 months with XRT Malignant ascites, malignant pleural effusion, malignant bowel obstruction: ~ 6 months Advanced COPD and the BODE Index Advanced COPD: Useful Prognostic Markers About 10% of patients with PACO2>50 will die in index hospitalization, 33% within 6 months, 43% at 1 year Requiring mechanical ventilation has in-hospital mortality of 25% Poor prognostic factors are low albumin, low Hb, co-morbid illness, previous intubation, failed extubation, intubation> 72 hours Hospice admission guidelines are dyspnea at rest, FEV1<30%, progressive disease, cor pulmonale or right sided heart failure, hypoxemia at rest, PCO2>50, weight loss and tachycardia Palliative Care Fast Facts 10

11 Prognosis After Emergency Department Intubation to Inform Shared Decision-Making 65 and older intubated in ED from 262 hospitals across US, 35,036 included in final analysis In-hospital mortality was 33% 24% discharged home, 41% other than home Age and older Mortality rate 29% 34% 40% 43% 50% Ouchi K, J Am Geriatr Soc.2018 Jul;66(7): CHF: Useful Markers Triggering Discussion Increased symptom burden/ decrease quality of life Significant decrease in functional capacity (loss of ADL s, falls, transition of living situation) Recurrent hospitalization Serial increases in diuretic dose Symptomatic hypotension, refractory fluid retention ICD shock Inotropic support Consideration of renal replacement therapy Decision making in advanced heart failure: a scientific statement from the American Heart Association CHF: Problems with prognosis Episodic nature and number of ways patient dies makes it hard High incidence of sudden death Many die with acute exacerbation, but hard to predict which is fatal Normal EF heart failure and low EF have similar prognoses Class IV (symptoms at rest) 1 year mortality is 20 to 50% Decision making in advanced heart failure: a scientific statement from the American Heart Association

12 CHF: Seattle Heart Failure Model More specifics on How for someone with a prognosis with great variability Back to our 77 y/o F patient with ischemic heart failure NYHA class IV is seeing you in clinic. She has had one hospitalization in the last year for her CHF. She weighs 80 kg and she is on lasix, but she has had great difficulty in tolerating a statin. She is often short of breath at rest. Her EF is 30%. Her Hb is She has a lymphocyte count of 20. Her sodium is 130. She has an ICD. The Seattle Heart Failure Model: Our Patient For variable prognoses, use a 'best case/worst case' frame 12

13 The Surprise Question Would you be surprised if this patient died in the next year? Oncologists classified patients with cancer into No (16%) and Yes (84%) groups No response identified patients with cancer who had 7 times greater hazard of death (HR) in the next year compared to patients in the Yes group (HR=7.8, p<0.001) This has been validated in dialysis patients and oncology patients Problems with the Surprise Question Is it actually helpful in predicting survival, or simply good at telling when people are appropriate for ACP and Palliative Care? For prognosis: Low sensitivity (67%) and moderate specificity (80%) in metaanalysis for predicting prognosis Moderate to high degree of bias from low or unknown participation rates or had missing data More accurate in patients with cancer than patients without cancer Downar J. CMAJ Apr 3;189(13) White N. BMC Med Aug 2;15(1):139 How do families of patients prognosticate? Prospective study using face-to-face interviews with 179 surrogates of incapacitated critically ill patients assessed what surrogates rely on when estimating patients prognoses <2% reported basing their view solely on physician s prognostic estimate, weighing that against: Their knowledge of patient s intrinsic qualities/ will to live Their observations of the patient Their belief in the power of their support and presence Optimism, intuition, and faith Most balanced these sources with physician s knowledge/ judgment 20% said a faith in God overrode any source of prognostic information Boyd EA, Lo B, Evans LR, et al. Crit Care Med 2010;38:

14 How do families of patients prognosticate? Qualitative/ quantitative study interviewing 50 surrogates of incapacitated ICU patients assessed whether physicians could predict poor prognosis 64% expressed reluctance/ unwillingness to believe physicians predictions Skepticism about physicians prognostic abilities A need to see for themselves that a patient was incapable of recovery A need to triangulate multiple sources of information A belief that God could intervene to change the course 18 surrogates doubted physicians prognosticating ability based on religious grounds alone (God capable of miracles) Were more likely to continue life support despite poor prognoses Zier LS, Burack JH, Micco G, et al. Chest 2009;136:110 e117. How these studies guide my discussion What things do you need to see to believe your loved one will get better? What things do you need to see to believe your loved one will get worse? What other sources of information do you need to have a sense of what will happen? More Specifics on How: Understand exactly what prognosis info the patient wants Patient asks What is going to happen? Clarify: Let me make sure I understand. Do you mean what we will decide today, or what will happen in the future? Saying: You are very sick and could have months to live is very factual and may not be what the patient is asking Saying It is really hard to say with heart failure is not very helpful From CAPC.org, Prognosis module 14

15 More Specifics on How Understand exactly what prognosis info the patient wants No, I mean how long can I live like this? Thank you - that is a good question. Are you interested in how long people like you typically live? Or sometimes people are thinking about an important future date, like an anniversary? Validates the importance, and gets more specific You may say around a year or It s hard to predict These are vague and not very helpful Giving info they are not looking for is less likely to stick and lead to Advance Care Planning From CAPC.org, Prognosis module More Specifics on How: For variable prognoses, use a 'best case/worst case' frame Yes, I want to know how much time I have got I will give a worst case scenario, and a best case scenario. The worst case is sudden death, which is a risk with heart failure which can happen any time. Another possibility is you got a bad pneumonia or another heart attack, it could be fatal, and that could happen in the next 6 months to a year. The best case is you have about 3 years. Prepares for variability Builds prognostic awareness for the patient better than focusing on outliers like I have seen people live for years Focusing just on the worst case sets us up for being wrong From CAPC.org, Prognosis module More specifics on How Look for emotion cues and respond empathically. Prognostic information will likely be met with an emotional response I wish you could just help me die. I saw my brother die of heart failure and it was awful I can understand why you would say that. You may actually die because sudden death is possible. I m sorry but helping you die is not legal in this state. Or I can see this is very hard and scary for you. Tell me more about how you are feeling. Remember: respond to emotion first, cognitive info second From CAPC.org, Prognosis module 15

16 More specifics on How When patients mention how they are trying to cope, notice, endorse, and try to augment their efforts. Please pray for me It sounds like prayer is important for you. Tell me more about how faith plays a role in your life Positive reinforcement for constructive coping is extremely influential. From CAPC.org, Prognosis module More specifics on How Notice, endorse, and augment patient's efforts to cope I don t know how I am going to tell my husband this Explore opportunities to understand your patient s perception of family coping. Build understanding of family coping before offering advice. Where is your husband with coping and understanding? before I can help with that From CAPC.org, Prognosis module More specifics on How Explore your patient's perception of family coping and include others even when patient is clear When patients report family perceptions, consider it an opportunity to include the others--especially when they are important to the patient and to future decision making. My husband worries to much It sounds like she is concerned about you. When she comes back we can talk together about how she could be prepared and perhaps worry less? likely better than She shouldn t worry Reinforcing your patients' desire to care for their families can clarify the importance of advance care planning. From CAPC.org, Prognosis module 16

17 What should we try to do when we prognosticate? An Introduction to Prognostic Awareness The purpose of Prognosticating is not to be right. It is to give people a sense of what could happen to help them plan Prognostic Awareness The patient s capacity to integrate the likely disease trajectory and prognosis Patients with deeper prognostic awareness can: Weigh burdens and benefits of treatment Have more meaningful discussions of their goals/ values Match treatment decisions to goals and values From Prognostic awareness is dynamic, like a swinging pendulum Jackson 2013, Weissman

18 When patients can begin to acknowledge both realities, they can incorporate them into decision-making Chemotherapy at end of life Late hospice enrollment Death in an ICU Medical decisions Appropriate use of chemotherapy Timely hospice enrollment Death in desired place Living Goals and values Living Dying Less developed Prognostic awareness More developed Patients coping with serious illness have two main tasks To understand the likely trajectory of their illness To integrate their prognosis and life expectancy To achieve this they must develop both a cognitive and emotional understanding Integration happens over time It is a process Middle space of knowing- David Weisman Impossible to live with the awareness of one s terminality every minute of the day It is normal and healthy to have times when the patient almost forgets. This reality makes it hard for clinicians to know what the patient needs. 18

19 Patients integrate prognostic information variably Patient information preferences frequently change It is critical to understand two key concepts about the pendulum of understanding Patients integrate different things at different times from different clinicians Patients tell different things to different people at different times This is a normal phenomenon Don t vilify No one did a bad job Discussions about the possibility of dying enable the cultivation of prognostic awareness Practice thinking about prognosis Desensitize fears in talking about prognosis and illness trajectory Built skills in managing the strong emotions that accompany thoughts of prognosis Reconcile hopes for the future with the likely reality of the illness Being hopeful is a key component of living fully and developing prognostic awareness Helping patients live fully and hope promotes their ability to engage in difficult conversations about the illness We have to tolerate the hope Learn how to enjoy it with them Partner in realistic hopes 19

20 Provide prognostic information to help patients make informed decisions Patients can ask for two different types of prognostic information Doc, how much time do I have left? What is going to happen to me with this illness? Experts use specific skills to address patient ambivalence Ask-Ask-Ask-Tell-Ask Assess what patients really want to know What is making you ask right now? What exact information would be helpful? Time? Or function? What is your body telling you? The TELL for patients who want to know life expectancy Use a standard method to provide prognostic information about length of time the person has to live Days to weeks Weeks to months Months to years 20

21 The TELL for patients who want to know about function Patients do not know what it looks like to be ill and eventually die from a terminal illness They are often surprised that the decline is slow They want us to tell them what the illness trajectory will look like The TELL.. Prognostic information can be given kindly Patients want to know that we hope they will do well. The HOPE/ WORRY technique I hope that you feel well for a long time and I worry that it could be as short as a few months I hope that you regain some strength in your legs and I worry that you won t be able to Honest information precipitates emotion Prognostic information Less realistic Hope more realistic hopes Emotion Sadness, anger, or disbelief. 21

22 Patients invite us to respond to their emotions Direct empathic opportunity: I have been really depressed lately Indirect empathic opportunity: I am not sure what there is to look forward to. We make choices about how to respond Patient: I m not sure what there is to look forward to Terminators: Does not promote further discussion. Give factual info or unrelated question: This medicine could help your breathing Give premature reassurance: Give us time, I am sure I can help We make choices about how to respond Patient: I m not sure what there is to look forward to Continuers: Promotes validation or exploration of the emotions (NURSE) Name the emotion Understanding Respect Support Explore 22

23 When and Where should we prognosticate? When and Where should we prognosticate? Better at prognostication when death is close, but DMC is easily lost: 26% medicine inpatients, ICU >50%, Dementia 55% lack DMC DMC is never perfect In sick but competent inpatient adults, performance on tasks of judgement similar to children under 10 years old Cassell et al, Ann Intern Med 2001 Start the discussions in clinic Don t wait until it is an emergency During good periods without symptoms Ask them to come with their MPOA at the end of the day in a couple of weeks 23

24 Impact of Early Integrated Palliative Care on Prognostic Understanding My cancer is curable: Yes or No Palliative care v Standard care 82.5% v 59.6%, p=0.02 Temel JCO 29 (17) 2011 In well times, our job is to help patients simultaneously acknowledge both realities and manage the ambivalence Hope Living Realism Dying With practice, patients more easily make both realities part of their world view Hope Dying Realism Living 24

25 Cognitive model for providing prognostic information Assess desire for information Ask-Ask-Ask/Tell/Ask Communicate prognosis kindly Hope/worry Identify the affect Name and respond to it I wish Hope for things that are possible I am hoping Concluding with a plan Resources: UCSF free videos 25