MOLST Video: Honoring Patient Preferences

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MOLST Video: Honoring Patient Preferences

advances in health care and changing demographics have led to an aging population facing increasingly complex end-of-life care life expectancy and prevalence of chronic disease has increased adding to the complexity our increased comorbidities and frailty with advancing age changing families health care systems society and marketplace demands finally and perhaps more importantly we exist in a culture where death is viewed as optional unfortunately humane care for the dying is a social obligation not adequately met in our country including New York State too often death is considered a medical failure rather than the inevitable final chapter of life as a result many people approached death fearing abandonment during a time of need profound suffering of self and family and a protracted overtreated ending their fears are not unsubstantiated life-sustaining procedures are frequently administered in direct contradiction to the patient’s wishes despite the growing proclivity to administer life-sustaining treatment research indicates that increases in interventions have not reduced mortality rates in many cases life-sustaining treatment only prolonged the dying process reducing unwanted unneccesary in futile interventions at the end of life will realign the intensity of care more with patient preferences without adversely impacting mortality rates our objectives for this educational session include defying the role of most in advanced care planning describe the appropriate use of most discuss most as a pulsed paradigm explain the eight step most protocol describe the most community pilot in Monroe and Onondaga counties review available resources describe the confines of New York state law discuss the role of the New York State Department of Health according to the 2001 institute of medicine crossing the quality chasm report the new model for healthcare in the 21st century should be safe effective patient-centered timely efficient and equitable in this new model of care patients and families set realistic goals share in decisions and develop plans of care services are reliable accessible culturally sensitive and chosen based on informed knowledgeable shared decision-making using this model of care we need to provide what patients need at the end of life this includes compassion non abandonment acceptance clear information that enables determination of the goals of care identification of a surrogate decision-maker and preferences for care treatment as a whole person singer and colleagues identified and described the patient’s perspective of quality end-of-life care as receiving adequate pain and symptom management avoiding inappropriate prolongation of dying achieving a sense of control relieving the burden on loved ones and strengthening the relationship with loved ones McGraw and colleagues added respecting the uniqueness of the individual providing an appropriate environment addressing spiritual issues recognizing cultural diversity and effective communication between the dying person family and professionals as illustrated and writing your final chapter we need to think about talk about and prepare for death we need to engage in advance care planning process and complete advance directives unfortunately advanced directives have their own issues advanced directives are not widely utilized the advanced directive completion rate in the United States has not significantly increased since the passage of the patient self-determination act in 1991 the year the patient self-determination Act was passed 75% of Americans approved of a living will yet only 20% had some form of advance directive a 2002 studies showed no improvement in the advanced directives completion rate the completion rate remained at 15 to 20% completion rates were no better for higher risk individuals only 20% of the nursing home residents had any form of advance directive a November 2005 poll by the Pew Research Center for the people and the press revealed Americans are increasingly likely to plan for future

healthcare this poll performed after the chevelle case unfolded before the nation indicated 29% of Americans have advanced directives anyone can face sudden unexpected life limiting illness or injury thus advanced care planning is appropriate for all adults 18 years of age and older not only the subset of Americans with life limiting illness absence of legal documents can result in situations illustrated by Karen Ann Quinlan Nancy Cruzan Terri Schiavo all were young women whose acute medical crisis resulted in leaving them in a persistent vegetative state requiring legal intervention traditional advanced directives include the health care proxy and the living will and are for all adults the health care proxy form is the legal document that allows you to appoint a health care agent to make decisions for you in the event you are unable to do so for yourself due to illness or injury the living will is a document that allows you to outline medical procedures that you do or do not want in case you are unable to make healthcare decisions and have a terminal irreversible condition the living will is not a legal document but helps establish the clear and convincing evidence required by New York state law on the other hand actionable medical orders like the DNR order and most are for seriously ill patients are those near the end of life advanced care planning can be viewed across the health illness continuum moving from a state of healthy and independent to approaching the end of life traditional advanced directives like the health care proxy and living wills should be completed by all patients along the continuum there needs to be a shift to earlier completion by encouraging starting the process earlier along the health illness continuum actionable medical orders like the medical orders for life-sustaining treatment are targeted for seriously ill patients with multiple morbidities and increasing frailty with a life expectancy of one year all professionals are not comfortable speaking about death and end-of-life issues a self-assessment of potential barriers to initiating conversations will help healthcare professionals overcome them consider the barriers that keep healthcare professionals from engaging in the process ask yourself the following questions are you comfortable discussing death do you believe that accepting mortality is giving up hope are you afraid that a discussion about death will make it happen are you unwilling and/or unsure how to broach the subject do you understand the benefits of advanced directives in advanced care planning are you able to find reliable resources related to advanced directives in advanced care planning have you completed an advanced directive and shared your wishes with your family your physician and trusted individuals advanced care planning is a process like other processes in medicine a clinical pathway exists behavior is too complex to systematically and consistently respond to one type of intervention after years of clinical observation and extensive research purchase key and colleagues formalized the stages of change theory and provided a simplified view or attitude toward change that is the behavioral readiness to change using the stages of change discussion and intervention can be linked with the behavioral readiness to complete an advanced directive and thus can be more focused to be effective counseling should include key elements of the advanced care planning process and be individualized according to the patient’s current condition and behavioral readiness to complete an advance directive stages of change is integrated into the advanced care planning clinical pathway this clinical pathway is available on the community website and is interactive two clinical pathways exist one for those with the life expectancy of greater than a year and one for those with life expectancy of less than a year in stage one or pre-con completion the patient sees no need to complete an advanced directive and the intervention is focused on providing educational information about advanced directives in stage 2 or contemplation the patient sees the need to complete an advanced directive but has barriers or reasons why the advanced directive is not done discussion and interventions should be directed to identified patient barriers and assisting the patient in removing the barriers in stage 3 or preparation the patient is ready to complete an advanced directive or has already started and the primary intervention should focus on motivating the patient in stage 4 or action the patient has completed an advanced

directive that reflects patient wishes once completed the advanced directive documents should be reviewed by the physician for accuracy of completion to ensure compliance with state law and consistency with expressed wishes in addition to obtaining a copy of the completed advanced directives patient values and preferences should be elicited encourage the patient to discuss their wishes with family and significant others the designation of an appropriate healthcare agent or surrogate decision maker will help prevent the uncertainties that arise in decision-making at critical points in the course of providing care inquire about organ donation stage 5 or maintenance reflects the need to review and update advanced directives periodically advanced directives need ongoing reassessment and periodic updates after major life events like divorce birth of a child death of a spouse the patient may wish or need to choose a new health care agent goals of care and preferences may change as chronic illness progresses and after patients receive complicated life-sustaining treatment discuss palliative care options including hospice consider introducing the palliative care team if needed as a disease progresses advanced directives are rarely precise enough in a specific situation since it is difficult to predict all possible scenarios and outline guidance thus for patients with serious illness and a life expectancy of less than one year complete the moles form in 2006 the National Quality forum published the framework and preferred practices for quality palliative care and hospice care including five focused preferred practices for advance care planning adapted for New York State these community goals include document the designated agent or surrogate decision-maker in a healthcare proxy for every patient in primary acute and long-term care and in palliative and hospice care document the patient preferences for goals of care treatment options and setting up care at the first assessment and at frequent intervals as the condition changes convert the patient treatment goals into medical orders and ensure that the information is transferable and applicable across care settings including long-term care emergency medical services and hospital that is the medical orders for life-sustaining treatment or most a pulsed paradigm program make advance directives in surrogacy designations available across care settings develop and promote healthcare and community collaborations to promote advance care planning and completion of advanced directives for all individuals in 1997 the institute of medicine issued a report entitled approaching death improving care at the end of life focusing attention on the need for improvement in the delivery of the end-of-life care quality indicators in this report focused on location of death and consistency with patient wishes effective pain management honoring patient treatment preferences and appropriate referrals to hospice currently conversations about death are too often avoided until a crisis occurs resulting in inadequate advance care planning and patient preferences not being known or honored in recent polls more than 70% of Americans surveyed indicated that they wanted to die at home but in reality only 25% of Americans do die at home while 25% died in nursing homes and 50% died in hospitals for long-term residence the nursing home is their home there is regional variation in hospital deaths for example New York State is higher and Oregon is lower than the national average in response an end-of-life palliative care professional advisory committee was convened and the Rochester community end-of-life survey was executed the community-wide end-of-life palliative care initiative was launched in spring 2001 when survey results showed Rochester also had room for significant improvement the community-wide end-of-life palliative care initiative began in Rochester New York in spring 2001 and has expanded across the state over time originally four work groups were organized in concrete projects with specific goals and objectives were developed workgroup one focused on increasing the completion rate of advanced directives an increasing engagement of individuals in the advanced care planning process workgroup two focused on ensuring that patient preferences would be honored once advanced directives were completed workgroup three collaborated on the development of the community principles of pain management work group 4 focused on consumer education and launched a

community website compassion and support org that has undergone revision and expansion is part of the most DVD and web-based tools project the epic project for professional education has been replicated throughout upstate New York recently a Peg’s workgroup has completed its work guidelines for long-term feeding tube placement can be found at the community website along with further information on all of these projects the first step taken by the work group focused on honoring patient preferences was a literature search research suggests a need for a more comprehensive system based approach to ensure effective advance care planning and end-of-life decision-making the physician orders for life-sustaining treatment pulsed paradigm program presents such a system based approach particularly for patients with advanced chronic illness with a life expectancy of less than one year the pulse paradigm program is based on effective communication documentation of medical orders and responsiveness of the healthcare system in an emergency and at transitions of care New York State is a leader and one of six states with a pulsed paradigm program a decade of research in Oregon has proven that the pulse program more accurately conveys end-of-life preferences and yields higher adherence by medical professionals research conclusions from seven studies have shown that pulsed is more effective in 1996 focus groups indicated that pulsed improved agreement with patient wishes in 1998 none of 180 nursing home residents with pulsed orders for do not resuscitate and comfort measures only received CPR or I see you type care all residents had their wishes honored in 2000 when given a choice frail elders limited CPR 91% of the time antibiotics 86% of the time IV fluids 84% of the time and feeding tubes 94% of the time none of the choices was 100 percent of the time in 2004 96 percent of Oregon’s nursing homes report that pulsed is used to guide decisions over time pulsed has evolved to the level of a care standard in nursing homes in 2004 seventy-five percent of residents with a DNR order preferred some additional interventions while 47 percent of residents with a CPR order preferred some limitation in 2004 Oregon EMTs indicated that pulse changed treatment and forty-five percent of the patients in 2004 pulse was congruent with advanced directives in all Washington state nursing home residents who also indicated a high degree of satisfaction with a pulsed the pulse program has been a key vehicle in Oregon successful efforts to increase the effectiveness of advanced care planning and decrease unwanted hospitalizations at the end of life in summary the history of the most program is work was initiated in fall 2001 the form creation was completed in November 2003 and implementation began in Rochester healthcare facilities most was adapted from Oregon’s pulsed and combines DNR DNI and other life-sustaining treatment along with New York state law collaboration with New York State Department of Health began in March 2004 and resulted in a revised forum in October 2005 this new revised forum is consistent with New York state law and approved as an inpatient DNR form the most pilots in 2005 the chapter amendment was passed in 2006 the community pilot was officially launched on May 1st 2006 as originally conceived the goals of the Mol’s program are to promote patient autonomy by documenting a patient’s treatment preferences with regard to CPR mechanical ventilation and other life-sustaining treatment to enhance and facilitate the transfer of these preferences across care settings to facilitate appropriate treatment by EMS personnel and to reduce repetitive documentation in complying with New York state law and the federal patient self-determination act Mol’s contains core elements required for a pulse paradigm program these include Mull’s contains actionable medical orders most is recommended for use in persons who have advanced chronic progressive illness and anyone interested in further defining their end-of-life care wishes Mull’s may be used either to limit medical interventions or to clarify a request for all medically indicated

treatments including resuscitation moles provides explicit direction about resuscitation status if the patient is pulseless and APNIC most includes directions about other types of intervention that the patient may or may not want most is a bright pink color that is easily identifiable in case of emergency whilst accompanies the patient and orders apply as he or she is transferred home or to a new care setting for example a long-term care facility or a hospital mull should be reviewed and renewed periodically as required by New York state and federal law and regulations if the patient’s preferences change if the patient’s health status changes if the patient is transferred to another care setting the program includes training of healthcare professionals about the goals of the program and use of the forum and features a plan for ongoing monitoring of the program and its implementation when I utilizes the eight step most protocol and it’s something it’s a tool that’s available for medical professionals to really assist them and guide them in the medical discussion and talking with patients regarding the MAS document the most eight step protocol is designed to assist healthcare professionals with the process first prepare for discussion understand the patient and family understand the patient’s condition and prognosis retrieve completed advanced directives determine who the healthcare agent or responsible party is determine what the patient and family already know explore goals hopes and expectations suggest realistic goals when needed respond empathetically use the moles to guide choices and have the patient’s share their wishes the informed medical decision making process and conflict resolution play a major role here complete and sign the most review and revised periodically goals of care and palliative care change all the time what could have been there on admission was a very grave situation that sometimes improves and certain things can change and we’ve had family members make decisions and the patients have improved to the point that the patient can now get more involved in those decision makings or in the opposite someone comes in they’re not that bad or the family didn’t accept the fact of how bad they are and it takes a few days for that to sink in and the goals change as the medical condition changes language to describe goals of care should align with the patient’s goals for example we’ll do everything we can to help you maintain your independence we want to ensure that your father receives the kind of treatment he wants your grandmother’s comfort and dignity will be our top priority using correct language can help reframe hope let’s hope for the best and plan for the worst we will assure that there are no missed opportunities we will work together to meet your needs and goals understanding what is possible and what we wish could happen but cannot we want to give the best care possible until the day you die enjoy the time remaining however long that is an important part of my discussions with parents when I talk to them alone is to tell them we need to approach these issues with your child how do you think the best way to do that is I know I’m an expert in cancer or end-of-life care but they’re the experts on their child and I asked I asked them and include them and say how do we do this together as we speak we must listen through the ears of the patient and family he’s stable when the patient is on pressors a ventilator dialysis often means to the patient’s family he is getting better do you want us to do CPR means she has a chance of surviving if we do CPR do you want to trach him means he has a chance of coming off the ventilator in going home language often has unintended consequences examples include do you want us to do everything possible will you agree to discontinue care I think we should stop aggressive and curative therapy there is nothing more we can do open-ended questions often help the patient and physician begin the conversation what does your illness mean to you what do you hope we can accomplish with our medical care what are your greatest

hopes about your health what are your greatest fears how can I help you best today how can I help you and your family cope physicians markedly overestimate prognosis accurate information helps the patient and family cope and plan physician should offer a range or average for life expectancy for example minutes to hours hours to days days to weeks generally when someone stops eating it usually signifies ER in the last weeks to months of their illness patients and Families have significant functional health illiteracy with regards to life-sustaining treatment adding to the burdens of medical decision-making studies have shown that physicians speak 75% of the time and use medical jargon further studies reveal that after discussions related to CPR 66 percent of individuals did not know that many patients need mechanical ventilation after resuscitation 37 percent thought ventilated patients could talk and 20 percent thought ventilators were oxygen tanks most people who are in cardiac arrest in the community only about 5 percent survive based on research that we did here in Rochester physicians tend to overestimate the likelihood of survival of in hospital cardiopulmonary arrests to hospital discharge the literature reports an average survival rate of 15 percent at least 44 percent of the survivors have a significant decline in functional status at the time of discharge improve survival rates with good functional recovery are reported with a duration of CPR shorter than five minutes and CPR occurring in the ICU poor outcomes at all sites of care are associated with an unwitnessed arrest asystole electrical mechanical dissociation greater than 15 minutes of CPR metastatic cancer multiple comorbid and sepsis chronic illness more than age determines prognosis in the elderly elderly with chronic illness have an average survival rate of less than five percent for individuals with advanced illness survival rates are often less than one percent for example bed fast patients with metastatic cancer who are spending 50 percent of their time in bed have a survival rate of 0 to 3 percent experts speculate that survival rate misconceptions are further complicated by the fact that 67% of resuscitations are successful on television attempts to educate patients are successful in one study of 371 patients age greater than 60 years of age 41% wand at CPR after learning the probability of survival only 22% wanted cpr long term artificial hydration and nutrition we want to look at the big picture and there are some times when placing a PEG tube is very warranted someone who has a reasonable quality of life and function has some sudden illness and you want to make sure that they get artificial feeding to be able to recover from that illness so there are times where we’ll try a trial of artificial feeding I think it’s really important though before you start that feeding to really talk about what your goals are and some of those goals can be that a person regains their ability to make their own decisions or regains their ability to start eating on their own again to swallow food to enjoy food and I think it’s important that if you are going to have a trial of artificial feeding similar to a trial of any type of medical therapy that you decide on what your goals are ahead of time and those should be revisited frequently to determine whether that therapy is working or not and under some instances it may work and a person does regain their ability to swallow and and then you can stop the therapy but if the person continues to decline if they have not regained their ability to swallow you start to notice that you’re getting into trouble with a lot of secretions in their mouth that needs suctioning which is very uncomfortable for patients then you can have a discussion with a family about stopping the feedings it’s much easier if you’ve really talked about what the goals are before initiating therapy and though we know there’s no legal moral or ethical difference between stopping and stuff is starting and stopping a therapy emotionally it’s much harder to stop some therapies once you’ve started them and artificial feeding is one of those another issue is to provide comfort and

we did research looking particularly at this issue and found that people who choose chose not to have two feedings near the end of their life and had careful hand feeding and had any kind of food that they might want really had very comfortable deaths and there is some literature out there that shows that people who get artificial feedings and hydration often develop more secretions in their mouths and have trouble clearing them coffee lot and may be more uncomfortable than if they had the amount of food and fluids it they could comfortably eat naturally what we do know is that by careful hand feeding with even small amounts of food people can still enjoy that and it also encourages more connection between the providers and the patient it’s easy to come in and just hang up tube feeding of javadi and leave the room and whenever you have things like IVs and tubes attached to someone those tend to get these have to be tended to and they are and so one of the things it doesn’t happen maybe is that careful sitting down talking to someone touching them and there’s an opportunity cost there when you’re tending to all these medical interventions that don’t make a big difference that sometimes that meaningful human connection doesn’t take place as much and you’ve really missed opportunities to make someone more comfortable and so one of the disturbing transit we’re seeing our that we feel that artificial feedings could potentially be used because they’re more cost-effective and that person doesn’t experience the joy of having food in their mouth and tasting it I think one thing we really want to make sure it doesn’t happen is that tube feedings just become a more convenient cheaper way of feeding people newly developed guidelines for long-term feeding tube placement are available at the community website compassion and support org