An obscure provision in the House of Representatives Healthcare
Reform Plan provoked strong opposition and highlighted our collective
discomfort in talking about end of life care, death and money. This new
provision simply allows for providers to be paid when they speak with
patients regarding their medical wishes at end of life. This strong
outcry which spoke of "death panels" suggests that it possibly touched
an even deeper unexpressed fear. The fear that we will be abandoned at
the time of our life where we are at our most vulnerable. It may be
uncomfortable to talk about dying and money but we should at least ask
ourselves the question, "Are we getting the best care for the money that
we are spending on our loved ones at the end of life?" The answer is
sometimes "No." When elderly patients die in inappropriate settings, it
is often very expensive and their comfort needs may or may not be well
attended to. As seen on the CBS show 60 minutes this week, there is also
a very high cost associated with care that may be viewed as futile.
The greatest fear is that with this healthcare plan, we will lose the ability to choose our medical treatments and healthcare will be rationed. These fears seem so out of touch with what is witnessed daily by nurses in the acute care setting. The reality is that many patients continue to receive inappropriate and expensive treatments. Treatments that cause distress and provide little benefit. That many treatments are chosen without evaluating the evidenced based information on their benefits or burdens. In all these conversations, no one seems to ponder the following questions: What do dying patients want? What does the research tell us about how are we doing in caring for patients at end of life? What is the view of the care of the dying from the bedside in a hospital?
What do patients who are approaching the end of life want? Dying patients participated in a research study printed in the Journal of the American Medical Association in 2000. These patients identified six components of a good death. #1 was to make them comfortable by controlling pain and shortness of breath. #2 was to allow them to participate in decision making. The patients wanted to be informed when their condition was changing so that they could make their own decisions. #3 was that they wanted to know what to expect during the course of their illness and they wanted to plan for events like their funeral. #4 was that they wanted to resolve conflicts and to spend time with family saying "goodbye." #5 was that they wanted to continue to share their time and knowledge and to be of use to others. A central theme voiced loud and clear by the dying patients was their desire for ongoing communication, awareness of the severity of their illness in addition to being able to voice treatment preferences. Many patients choose inappropriate treatments because they cannot comprehend the severity of their illness and the futility of continuing to be treated. Some patients are told, but cannot hear. Others are told but the words that are used may be open to interpretation. How can we get better at telling the truth to help them to make good decisions, without taking away all hope?
What does the research tell us about how are we doing in caring for patients at end of life? A pivotal study called the SUPPORT study in 1995, worked with dying patients and their families using a specially trained nurse in hospitals to elicit the patient's end of life preferences and hopefully to improve care. The study demonstrated that there were substantial short comings in the care that people were receiving at end of life and that even with focused communication, advocacy and specialized education it made little difference. This study also reported that patients who were dying had moderate to severe pain and do not resuscitate orders were written only two days before death. More recent studies estimate that forty percent of patients at end of life who were admitted to the hospital were inappropriate, resulting in increased health care costs, and increased illness and increased mortality of frail elderly patients. In other studies, authors have observed the tendency towards increased aggressive interventions in some hospitals and even in different parts of the country. The general observation is that if you go to the hospital for treatment at end of life, you will be offered most available treatments.
What is the view of the care of the dying from the bed side? Intensive care nurses readily share their stories of failed efforts at advocacy. The stories often start with a seriously ill elderly patient who is brought to the hospital by their family. The family does not realize that dying has begun and there is no plan in place for the elderly patient to receive care. Complicating the situation, medical personnel speak a language that is foreign to most lay people. In intensive care for example, the patient may be seen by multiple specialists, with each one working hard to improve the patient's condition. Each patient often has a pulmonary specialist, cardiac specialist and renal specialist.
Each specialist reports to the patient's decision maker on their specialty area's progress, making it difficult for the decision maker to get enough big picture information to determine if meaningful recovery is still possible. All medical providers use different words to communicate the seriousness of illness. I remember telling the son of an elderly patient that I thought his father would likely die within a few days. The patient's healthcare provider told the son that his father was "seriously ill". The son presumed that "seriously ill "meant recovery was still possible, he approved insertion of a feeding tube and his father died within 48 hours.
Oftentimes treatment options are presented but the available research on those treatment options is not known and therefore not presented. For example, since 1995, there have been multiple research studies that have questioned the benefit of tube feeding for end stage patients with dementia. Despite this information, 1/3 of patients with dementia are tube fed. The National Alzheimer's Association discourages tube feeding and encourages hand feeding. In fact, some data suggested that tube feeding may actually make patients die sooner and create new illnesses and decrease the patient's overall quality of life. Sometimes the provider offers to do what the family wants, even though there is little benefit for the patient. I once witnessed a provider who said to a family, "tube feeding is not recommended but I can put one in if you want." This family accepted feeding tube insertion because they felt that the provider personally endorsed insertion of a tube. Nurses at the bedside witness these conversations with families on a daily basis and for them it creates ethical distress. It is often the caring acute care nurse who quietly pulls the family aside and says "have you thought about hospice care."
Making medical decisions in a crisis in an acute care setting is not the best way for end of life patients. It is far better to identify patients who may die soon and provide care for them at home thereby avoiding placing fragile elders in acute care. Somehow, the "red flags" that indicate decline are missed by providers and family. These indicators of decline are simpler that you think. Weight loss and functional decline are the primary indicators. Even subtle increases in the patient's need for assistance with care needs can indicate decline. Evidence of poor immune function with increasing infections in bladder and lung are strong indicators of decline. Increasing symptoms such as pain and dyspnea are also strong indicators.
The solution to improved end of life care is education. The Healthcare Reform Plan promotes education for all providers working in areas where end of life care is provided. With this education, providers in nursing homes and hospitals will be able to accurately communicate benefits and burdens of treatments. End stage patients will be able to choose to remain in their nursing facilities and avoid unnecessary hospital stays when hospitalization is expected to worsen decline and increase distress. We desperately need the education that will be provided by the Healthcare Reform Plan. Informed consumers will receive better end of life care, palliative care and hospice care resulting in more comfortable deaths and more satisfied care givers.
The greatest fear is that with this healthcare plan, we will lose the ability to choose our medical treatments and healthcare will be rationed. These fears seem so out of touch with what is witnessed daily by nurses in the acute care setting. The reality is that many patients continue to receive inappropriate and expensive treatments. Treatments that cause distress and provide little benefit. That many treatments are chosen without evaluating the evidenced based information on their benefits or burdens. In all these conversations, no one seems to ponder the following questions: What do dying patients want? What does the research tell us about how are we doing in caring for patients at end of life? What is the view of the care of the dying from the bedside in a hospital?
What do patients who are approaching the end of life want? Dying patients participated in a research study printed in the Journal of the American Medical Association in 2000. These patients identified six components of a good death. #1 was to make them comfortable by controlling pain and shortness of breath. #2 was to allow them to participate in decision making. The patients wanted to be informed when their condition was changing so that they could make their own decisions. #3 was that they wanted to know what to expect during the course of their illness and they wanted to plan for events like their funeral. #4 was that they wanted to resolve conflicts and to spend time with family saying "goodbye." #5 was that they wanted to continue to share their time and knowledge and to be of use to others. A central theme voiced loud and clear by the dying patients was their desire for ongoing communication, awareness of the severity of their illness in addition to being able to voice treatment preferences. Many patients choose inappropriate treatments because they cannot comprehend the severity of their illness and the futility of continuing to be treated. Some patients are told, but cannot hear. Others are told but the words that are used may be open to interpretation. How can we get better at telling the truth to help them to make good decisions, without taking away all hope?
What does the research tell us about how are we doing in caring for patients at end of life? A pivotal study called the SUPPORT study in 1995, worked with dying patients and their families using a specially trained nurse in hospitals to elicit the patient's end of life preferences and hopefully to improve care. The study demonstrated that there were substantial short comings in the care that people were receiving at end of life and that even with focused communication, advocacy and specialized education it made little difference. This study also reported that patients who were dying had moderate to severe pain and do not resuscitate orders were written only two days before death. More recent studies estimate that forty percent of patients at end of life who were admitted to the hospital were inappropriate, resulting in increased health care costs, and increased illness and increased mortality of frail elderly patients. In other studies, authors have observed the tendency towards increased aggressive interventions in some hospitals and even in different parts of the country. The general observation is that if you go to the hospital for treatment at end of life, you will be offered most available treatments.
What is the view of the care of the dying from the bed side? Intensive care nurses readily share their stories of failed efforts at advocacy. The stories often start with a seriously ill elderly patient who is brought to the hospital by their family. The family does not realize that dying has begun and there is no plan in place for the elderly patient to receive care. Complicating the situation, medical personnel speak a language that is foreign to most lay people. In intensive care for example, the patient may be seen by multiple specialists, with each one working hard to improve the patient's condition. Each patient often has a pulmonary specialist, cardiac specialist and renal specialist.
Each specialist reports to the patient's decision maker on their specialty area's progress, making it difficult for the decision maker to get enough big picture information to determine if meaningful recovery is still possible. All medical providers use different words to communicate the seriousness of illness. I remember telling the son of an elderly patient that I thought his father would likely die within a few days. The patient's healthcare provider told the son that his father was "seriously ill". The son presumed that "seriously ill "meant recovery was still possible, he approved insertion of a feeding tube and his father died within 48 hours.
Oftentimes treatment options are presented but the available research on those treatment options is not known and therefore not presented. For example, since 1995, there have been multiple research studies that have questioned the benefit of tube feeding for end stage patients with dementia. Despite this information, 1/3 of patients with dementia are tube fed. The National Alzheimer's Association discourages tube feeding and encourages hand feeding. In fact, some data suggested that tube feeding may actually make patients die sooner and create new illnesses and decrease the patient's overall quality of life. Sometimes the provider offers to do what the family wants, even though there is little benefit for the patient. I once witnessed a provider who said to a family, "tube feeding is not recommended but I can put one in if you want." This family accepted feeding tube insertion because they felt that the provider personally endorsed insertion of a tube. Nurses at the bedside witness these conversations with families on a daily basis and for them it creates ethical distress. It is often the caring acute care nurse who quietly pulls the family aside and says "have you thought about hospice care."
Making medical decisions in a crisis in an acute care setting is not the best way for end of life patients. It is far better to identify patients who may die soon and provide care for them at home thereby avoiding placing fragile elders in acute care. Somehow, the "red flags" that indicate decline are missed by providers and family. These indicators of decline are simpler that you think. Weight loss and functional decline are the primary indicators. Even subtle increases in the patient's need for assistance with care needs can indicate decline. Evidence of poor immune function with increasing infections in bladder and lung are strong indicators of decline. Increasing symptoms such as pain and dyspnea are also strong indicators.
The solution to improved end of life care is education. The Healthcare Reform Plan promotes education for all providers working in areas where end of life care is provided. With this education, providers in nursing homes and hospitals will be able to accurately communicate benefits and burdens of treatments. End stage patients will be able to choose to remain in their nursing facilities and avoid unnecessary hospital stays when hospitalization is expected to worsen decline and increase distress. We desperately need the education that will be provided by the Healthcare Reform Plan. Informed consumers will receive better end of life care, palliative care and hospice care resulting in more comfortable deaths and more satisfied care givers.
