Tarrant Area Gerontological Society | PO Box 162201, Fort Worth, TX 76161 | 817-531-8890
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Advance Health Care Planning: A Challenge Worth Meeting
By Kendra Belfi, MD, CMD, FACP
As an internist geriatrician who works in multiple care settings including my outpatient office, the hospital AND the nursing home, I see the results of end of life planning or the lack thereof on a not infrequent basis. As a result of many difficult conversations in the middle of crises in the emergency room or intensive care unit, I have become convinced that it is important to begin to explore these issues long before the crisis occurs.
What is advance health care planning? It is simply planning in advance for possible medical decision making in the future in the event of a medical illness or emergency during which you are unable to speak for yourself. This is best done when you are healthy or at least stable and able to think clearly about your beliefs and values. Making a good advance health care plan also requires having some knowledge about choices which you might need to make in the future…. specific to your individual medical situation. For example, someone with significant lung disease might need to consider whether or not to agree to being placed on a ventilator if he developed a severe pneumonia and someone with kidney disease would need to consider the pros and cons of dialysis if his kidney function worsened significantly.
An important part of this planning is the appointment of a surrogate decision maker who can speak for you and be your advocate with the health care system in the event in which you are unable to speak for yourself. I tell my patients that this person needs to be someone that you trust enough to have fairly detailed conversations with concerning your wishes and values-but also someone who will agree to carry out your wishes and who is strong enough to stand up for your wishes in a crisis. This generally requires the completion of a document which may be called a Medical Power of Attorney or Durable Power of Attorney for Healthcare and should not be confused with a financial power of attorney (especially since most of those documents state that the document does NOT give authority to make medical decisions.)
Several years ago there were a number of articles written questioning the effectiveness of current living will statutes. As it turned out two problems were identified. The first was that very few people completed directives and the second was that most were completed without any conversation concerning the intentions of the person writing the directive. The intent of completing directives is that a person’s wishes can be followed if known. Unfortunately, just completing statutory directives in a vacuum simply does not give enough direction to the health care agent to cover the complexity of decisions which may be required. In modern medicine, situations are often complex with decisions to be made which are not “black and white”. Many patients would say that they do not want to be put on a ventilator, for example, if they are not going to survive their illness or that they would not want to be on tube feedings. Unfortunately, it is often not possible to know when the person first presents to the emergency department what the outcome is likely to be. In fact, I frequently encourage people to consider time-limited trials in those situations until we can tell whether or not treatment will help.
In order to more fully understand a person’s intent in completing statutory directives, I strongly encourage conversations between the patient, the appointed surrogates and the primary physician. This should include exploration of what a patient means when he says “I don’t want to be a vegetable” or “I don’t want to be tied to machines”, which are common but vague comments. Dr. William Molloy, a geriatrician from Canada, has devised a directive called “Let Me Decide” which is not statutory in most states but which makes an excellent advisory directive. He asks patients to define what they consider an acceptable quality of life and then to request a level of treatment if the outcome is likely to be reversible, ending in an acceptable quality of life as defined by the patient, or irreversible, resulting in an unacceptable quality of life. Thus the patient himself is helping with decisions regarding these gray areas in advance of need. (The book Let Me Decide, ISBN-10 0143055496 is available at most online bookstores).
There are many other documents that can be helpful in getting a clearer idea of the patient’s intent. These include Five Wishes and Caring Conversations as well as some very detailed questionnaires that ask patients to indicate what they would want in a wide variety of situations. I often will ask a patient to simply write a letter, expressing her major concerns. It is not uncommon for a patient to have experienced a situation with a family member or friend that she wants to avoid in her own life. I actually prefer the more general approach because I think most people are not equipped to think about detailed situations such as some questionnaires require but can give us a better feel for their values with either a letter or a document such as Let me Decide.
Another approach to improving advance health care planning is the one which has been developed by the Gunderson Lutheran System in LaCrosse, Wisconsin. Respecting Choices© takes the approach of training facilitators to help people through structured conversations tailored to their health care status. This results in completing documents-both statutory and advisory-which are shared with the health care providers.
One of the major barriers to advance health care planning in this country is a general reluctance to even think about, let alone discuss, end of life issues. Yet, there have been studies which show the importance of these conversations.
A number of years ago a study was done in Oregon funded by the NIH which involved interviewing families after a death. They found that in the absence of advance care planning and directives this was one of the most stressful life events which the families had experienced. In addition, without such direction, families were much more likely to insist on continuing non-beneficial/futile care even if the patient was suffering. Conversely, if directives were in place, the families found the end of life much less stressful and were able to transition to comfort care when appropriate and focus on the quality of the patient’s last days. More recently a study was done simply looking at whether patients with advanced cancer had had conversations with their oncologist concerning their end of life wishes. Only 31% had had such conversations, but those who did had a better, less expensive and less technological end of life…. often at home or in hospice units instead of in an ICU.
None of us wants to die-but the vast majority of my patients DO care about the circumstances in which they will die. My patients tell me that they don’t want me to give up too soon, but they also do not want to have their lives prolonged “if it isn’t going to do any good”. My goal is to normalize those conversations for my patients-moving them to an expected part of routine health care instead of a crisis conversation in the ER or ICU…and to be certain that they have also communicated with their family or other surrogates and written something down so that when the crisis does occur, everyone can feel confident that the treatment decisions being made are honoring the patient’s wishes.
Dr.Belfi is an internist geriatrician in private practice in Fort Worth, Texas. She chairs a hospital ethics committee and also the Tarrant County Academy of Medicine Ethics Consortium and is a trainer for the AMA EPEC program (Education for Physicians in End of Life Care). She has been very involved in promoting advance care planning in her local community.
By Kendra Belfi, MD, CMD, FACP
As an internist geriatrician who works in multiple care settings including my outpatient office, the hospital AND the nursing home, I see the results of end of life planning or the lack thereof on a not infrequent basis. As a result of many difficult conversations in the middle of crises in the emergency room or intensive care unit, I have become convinced that it is important to begin to explore these issues long before the crisis occurs.
What is advance health care planning? It is simply planning in advance for possible medical decision making in the future in the event of a medical illness or emergency during which you are unable to speak for yourself. This is best done when you are healthy or at least stable and able to think clearly about your beliefs and values. Making a good advance health care plan also requires having some knowledge about choices which you might need to make in the future…. specific to your individual medical situation. For example, someone with significant lung disease might need to consider whether or not to agree to being placed on a ventilator if he developed a severe pneumonia and someone with kidney disease would need to consider the pros and cons of dialysis if his kidney function worsened significantly.
An important part of this planning is the appointment of a surrogate decision maker who can speak for you and be your advocate with the health care system in the event in which you are unable to speak for yourself. I tell my patients that this person needs to be someone that you trust enough to have fairly detailed conversations with concerning your wishes and values-but also someone who will agree to carry out your wishes and who is strong enough to stand up for your wishes in a crisis. This generally requires the completion of a document which may be called a Medical Power of Attorney or Durable Power of Attorney for Healthcare and should not be confused with a financial power of attorney (especially since most of those documents state that the document does NOT give authority to make medical decisions.)
Several years ago there were a number of articles written questioning the effectiveness of current living will statutes. As it turned out two problems were identified. The first was that very few people completed directives and the second was that most were completed without any conversation concerning the intentions of the person writing the directive. The intent of completing directives is that a person’s wishes can be followed if known. Unfortunately, just completing statutory directives in a vacuum simply does not give enough direction to the health care agent to cover the complexity of decisions which may be required. In modern medicine, situations are often complex with decisions to be made which are not “black and white”. Many patients would say that they do not want to be put on a ventilator, for example, if they are not going to survive their illness or that they would not want to be on tube feedings. Unfortunately, it is often not possible to know when the person first presents to the emergency department what the outcome is likely to be. In fact, I frequently encourage people to consider time-limited trials in those situations until we can tell whether or not treatment will help.
In order to more fully understand a person’s intent in completing statutory directives, I strongly encourage conversations between the patient, the appointed surrogates and the primary physician. This should include exploration of what a patient means when he says “I don’t want to be a vegetable” or “I don’t want to be tied to machines”, which are common but vague comments. Dr. William Molloy, a geriatrician from Canada, has devised a directive called “Let Me Decide” which is not statutory in most states but which makes an excellent advisory directive. He asks patients to define what they consider an acceptable quality of life and then to request a level of treatment if the outcome is likely to be reversible, ending in an acceptable quality of life as defined by the patient, or irreversible, resulting in an unacceptable quality of life. Thus the patient himself is helping with decisions regarding these gray areas in advance of need. (The book Let Me Decide, ISBN-10 0143055496 is available at most online bookstores).
There are many other documents that can be helpful in getting a clearer idea of the patient’s intent. These include Five Wishes and Caring Conversations as well as some very detailed questionnaires that ask patients to indicate what they would want in a wide variety of situations. I often will ask a patient to simply write a letter, expressing her major concerns. It is not uncommon for a patient to have experienced a situation with a family member or friend that she wants to avoid in her own life. I actually prefer the more general approach because I think most people are not equipped to think about detailed situations such as some questionnaires require but can give us a better feel for their values with either a letter or a document such as Let me Decide.
Another approach to improving advance health care planning is the one which has been developed by the Gunderson Lutheran System in LaCrosse, Wisconsin. Respecting Choices© takes the approach of training facilitators to help people through structured conversations tailored to their health care status. This results in completing documents-both statutory and advisory-which are shared with the health care providers.
One of the major barriers to advance health care planning in this country is a general reluctance to even think about, let alone discuss, end of life issues. Yet, there have been studies which show the importance of these conversations.
A number of years ago a study was done in Oregon funded by the NIH which involved interviewing families after a death. They found that in the absence of advance care planning and directives this was one of the most stressful life events which the families had experienced. In addition, without such direction, families were much more likely to insist on continuing non-beneficial/futile care even if the patient was suffering. Conversely, if directives were in place, the families found the end of life much less stressful and were able to transition to comfort care when appropriate and focus on the quality of the patient’s last days. More recently a study was done simply looking at whether patients with advanced cancer had had conversations with their oncologist concerning their end of life wishes. Only 31% had had such conversations, but those who did had a better, less expensive and less technological end of life…. often at home or in hospice units instead of in an ICU.
None of us wants to die-but the vast majority of my patients DO care about the circumstances in which they will die. My patients tell me that they don’t want me to give up too soon, but they also do not want to have their lives prolonged “if it isn’t going to do any good”. My goal is to normalize those conversations for my patients-moving them to an expected part of routine health care instead of a crisis conversation in the ER or ICU…and to be certain that they have also communicated with their family or other surrogates and written something down so that when the crisis does occur, everyone can feel confident that the treatment decisions being made are honoring the patient’s wishes.
Dr.Belfi is an internist geriatrician in private practice in Fort Worth, Texas. She chairs a hospital ethics committee and also the Tarrant County Academy of Medicine Ethics Consortium and is a trainer for the AMA EPEC program (Education for Physicians in End of Life Care). She has been very involved in promoting advance care planning in her local community.