By Dr. Aroop Mangalik
If you want to be comfortable, happy and be with your family and friends when you are facing a serious illness or are likely to die in the near future, you need to take control.
But ultimately, we all have to die.
Medicalization of death has occurred, to a significant degree, because we – society, patients and doctors – have not taken into account the fact that there are limits to life and that medical interventions can only do so much.
Understanding this reality is a major step that must be taken to get the best outcome for the patient.
How does one understand this? How do we take control of the situation?
The knowledge you need to get will necessarily come from your medical provider. The best decisions are made by having the facts – available treatment options and the likely outcomes.
Ask your provider about the nature of the illness and what is expected without any treatment.
The next steps will be to get a clear picture of what treatments are available. You should be able to get some idea of how likely it is that the treatments will improve the outcome for you.
This includes information on previous success and failures with available options. At least try to find out if the treatment is “very likely,” “likely,” or “not likely” to help.
Equally, important, you need to know what will be the side-effects of treatment. Will the treatments be harsh or mild, will they last for a short time or will they be persistent.
The cost in dollars is also something that must be considered. In this day of uncertainty we cannot ignore that factor. Many families face bankruptcy because of “long shot” medical treatments.
Once you have the information, you need to decide. It should be your decision based on the best information and input you can get.
If you feel that the treatments available to you are not going to help you achieve your goals, you can refuse those treatments. No one can force you to have a treatment you do not want.
If you choose the path of not taking the treatment, the focus changes from controlling the disease to making your life as comfortable as possible.
The medical team will work with you to control your symptoms. They will help you with pain control, nausea, vomiting, shortness of breath or difficulties in performing day-to-day activities. They will work with you to get the best out of life for whatever time you are alive.
There are many types of experts who are trained to help you. They have overlapping roles and expertise and they work together.
They are referred to as Palliative Care Specialists, Hospice Teams or Symptom Management experts. They all have the goals of making your life better and focus on you.
They also help you and your family so that you die comfortably and with dignity with your family and friends around you.
In certain circumstances, despite their efforts, living may feel like a burden. There are other options that can be utilized.
This is the option of you willfully ending your life at the time you choose. This option has been given a number of names. Physician-assisted death (and) assisted suicide being two common ones.
The option is currently available in Oregon and Washington State. In New Mexico, we are waiting for the courts to decide if such an action would be legal.
In summary, when faced with a serious illness, you should take control of your life and decide what is best for you.
Complete Article HERE!
by: Alex Smith
Perhaps you have said, or heard someone declare, “I want DNR tattooed across my chest!”
Well, someone actually had it done. See this image in JGIM of the tattoo and the unusual story behind it. In this case, the DNR tattoo was the result of a lost bet in a drinking game – bad idea jeans – the patient actually wanted to be full code!
This could be used a teaching image about respecting individuals’ rights to avoid resuscitation. The idea is to provoke a thoughtful discussion. Questions for trainees could include:
- What is behind the idea of the DNR tattoo? Why would someone say that, or do it?
- Imagine you are seeing a new patient who arrests in front of you. Preparing to do CPR you see a DNR tattoo on the chest. How do you respond? Why? Should DNR tattoos be respected?
- What can we do to protect the interests of people who really do not want to be resuscitated?
- Should we as a society put greater ironclad protections in place for people to irrevocably fix their code status at DNR? What are the risks? What if someone codes from anaphylaxis? Chokes on some food in front of you?
- What do you think about allowing leeway or flexibility in decision making? In all cases? Giving the surrogate leeway? The clinician? Do the advance directive forms or POLSTs you use allow for leeway? Should they?
- What do you think about Ulysses contracts? (Then Ulysses said, “Eurylochus, come quickly! Tie me to the mast, for I shall hear the Sirens song and live!”). Caringadvocates offers such documents (run by frequent GeriPal commenter Stan Turman). Example: do not give me food or water when I have advanced dementia, no matter what I say or do.
Feel free to share your teaching experiences in the comments. I think the geriatrics and palliative care communities really appreciated the discussion about how to use this video from a previous post as a teaching tool.
Complete Article HERE!
Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP
One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.
In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.
Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.
Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.
This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”
After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.
Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.
This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.
The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.
The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.
This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”
Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”
Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.
Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.
Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.
Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?
Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.
While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.
Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.
Complete Article HERE!
Researchers from Harvard Medical School soon will begin testing a checklist-style approach to helping cancer patients get the kind of end-of-life care they want. The plans, detailed in June at a meeting of the International Society of Advance Care Planning and End of Life Care, are aimed at helping oncologists discuss end-of-life care issues with patients at an earlier stage in the disease process.
The trial of the serious illness communication checklist will involve 60 practicing oncologists and begin enrolling 450 patients in June. Data on patient and family satisfaction and treatment choices will be collected over three years, researchers said.
A wide body of research has found that patients who plan ahead are likelier to get the treatments they want as they near death. These patients tend to get less-aggressive care, earlier referral to hospice, are more satisfied with their care and see lower burdens placed on family members, experts say. Yet fewer than one in three Americans has a living will, and only half of U.S. patients with terminal illnesses have such directives documented in their medical records, according to the Agency for Healthcare Research and Quality.
Nearly 90% of patients with cancer have documented end-of-life care discussions with their physicians, said a study of about 2,200 patients in Los Angeles and Toronto published in the Feb. 7 Annals of Internal Medicine (ncbi.nlm.nih.gov/pubmed/22312140/). But most of the talks happened in the hospital less than five weeks before death and were with physicians other than the patient’s oncologist.
“I always think about this idea that it’s too early until it’s too late,” said Susan D. Block, MD, principal investigator of the serious illness communication checklist study. “In medicine, in general, these conversations take place way too late. There are lots of excuses on everybody’s side about that, but it needs to change.”
Oncologists participating in the trial will undergo a 2½-hour training session on how to use the checklist. They can have nurse practitioners join them for the training and help carry out the conversations with patients, which can take 25 to 40 minutes. The checklist asks patients who are estimated to have less than a year to live to discuss:
Their understanding of the prognosis.
- How much information they want shared with loved ones.
- Their goals of care, should their health seriously worsen.
- Their biggest fears and what functional abilities they could not imagine living without.
- How much medical intervention they are willing to undergo to gain more time.
- How much they want family members to know about their priorities and wishes.
Talk focused on patient’s values
“We need to ask the right questions,” said Dr. Block, chair of the Dept. of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute in Boston. “Instead of focusing on procedures, we need to be focusing on goals, values, fears, quality of life, suffering and survival. Those are the things that matter to patients.”
The last step in the checklist is documentation, which integrates the patient’s answers — and any updates — into the electronic health record. The checklist has been piloted and fine-tuned during the last year, said Dr. Block, professor of psychiatry and medicine at Harvard Medical School. An abstract of her talk was published in the June issue of BMJ Supportive & Palliative Care (spcare.bmj.com/content/2/2/187.2.abstract).
Dr. Block was prompted to think about formulating the serious illness communication checklist by colleague Atul Gawande, MD, a professor of surgery at Harvard Medical School and author of The Checklist Manifesto: How to Get Things Right. Dr. Gawande, co-principal investigator of the study, had to overcome Dr. Block’s initial hesitation.
“I was very dubious,” she said in her presentation. “It seemed mechanical and reductionistic and cold to me, but I’ve warmed up to it. … I’m intrigued, in my mind, by this paradox — that something as routinized as a checklist could help with a conversation so deep and profound and complicated. It has some interesting potential, and we’re going to find out whether it works.”
Other presentations at the three-day conference focused on the challenges involved in advance care planning with racial and ethnic minorities, patients with disabilities and adolescents. Physicians, social workers, chaplains and other health professionals from Japan, Singapore, New Zealand, Australia and Canada presented information about end-of-life care planning initiatives in their countries.
Complete Article HERE!
By Jane Brody
Robert H. Laws, a retired judge in San Francisco, and his wife, Beatrice, knew it was important to have health care directives in place to help their doctors and their two sons make wise medical decisions should they ever be unable to speak for themselves. With forms from their lawyer, they completed living wills and assigned each other as health care agents.
For example, Judge Laws said in an interview, he’d want to be ventilated temporarily if he had pneumonia and the procedure kept him alive until antibiotics kicked in and he could breathe well enough on his own.
What he would not want is to be on a ventilator indefinitely, or to have his heart restarted if he had a terminal illness or would end up mentally impaired.
Nuances like these, unfortunately, escape the attention of a vast majority of people who have completed advance directives, and may also discourage others from creating directives in the first place.
Enter two doctors and a nurse who are acutely aware of the limitations of most such directives. In 2008, they created a service to help people through the process, no matter what their end-of-life choices may be.
The San Francisco-based service, called Good Medicine Consult & Advocacy, is the brainchild of Dr. Jennifer Brokaw, 46, who was an emergency room physician for 14 years and saw firsthand that the needs and wishes of most patients were not being met by the doctors who cared for them in crisis situations.
“The communication gap was huge,” she said in an interview. “The emergency room doctor has to advocate for patients. I felt I could do that and head things off at the pass by communicating both with patients and physicians.”
Sara C. Stephens, a nurse, and Dr. Lael Conway Duncan, an internist, joined her in the project. Ms. Stephens flew to La Crosse, Wis., to be trained in health care advocacy at Gundersen Lutheran Health System. Through its trainees, tens of thousands of nurses, social workers and chaplains have been taught how to help patients plan for future care decisions.
“People often need help in thinking about these issues and creating a good plan, but most doctors don’t have the time to provide this service,” said Bernard Hammes, who runs the training program at Gundersen Lutheran. “Conversation is very important for an advance care plan to be successful. But it isn’t just a conversation; it’s at least three conversations.”’
A Necessary Decision Process
Dr. Hammes, editor of a book, “Having Your Own Say: Getting the Right Care When It Means the Most,” said that while he is especially concerned that people 60 and older make their wishes known to family members and develop a cohesive plan, this should be done by someone who develops a serious illness at any age.
“People need to sit down and decide what kind of care makes sense to them and what doesn’t make sense, and who would be the best person to represent them if they became very ill and couldn’t make medical decisions for themselves,” Dr. Hammes said.
“If, for example, you had a sudden and permanent brain injury, how bad would that injury have to be for you to say that you would not want to be kept alive? What strongly held beliefs and values would influence your choice of medical treatment?”
Divisive family conflicts and unwanted medical interventions can be avoided when people specify their wishes, he said. His own mother “told us that if she had severe dementia, it would be a total waste of her life savings to keep her alive. She would rather that her children got the money.”
“We help people work through the decision process and involve those close to them so that the family shares in their goals,” Dr. Hammes said. “When patients have a care plan, the moral dilemmas doctors face can be prevented.”
At Good Medicine in San Francisco, Dr. Brokaw and her colleagues have thus far helped about two dozen people explain their goals and preferences, at a cost of $1,500 for each person.
“In today’s health care systems, families will be asked when patients can’t speak for themselves and many families are very unprepared to make these decisions,” she said.
Her colleague Ms. Stephens pointed out that only about a quarter of American adults have advance care directives of any kind, and only half of them have them in hand or know where they are should they be needed.
Furthermore, only 12 percent had any input from a physician when filling out the forms, which are often done alone or with a lawyer.
“Your lawyer shouldn’t be writing a medical contract any more than you’d want your doctor to write a legal contract,” Dr. Brokaw said.
The kinds of questions she said people should consider: What was your state of health at the start of the illness? What state are you likely to be in at the end of the illness? What, if anything, can provide a soft landing?
Proper Planning Helps Avoid Troubles
Judge Laws writes in the directive he is preparing, “After family, I value clarity of mind and the capacity to make decisions. To live well is to continue to possess the ability to converse, to read, to retain what I learn and to coherently reflect and understand. I do not want my life prolonged if I undergo a marked lessening of my cognitive powers.”
Judge Laws also does not want “to live with severe, distracting pain.”
His directive will request that any treatment he receive be compatible with those goals. He also writes that he expects his sons and his wife to support his decisions even if they disagree with them and not to let any quarrels over his care cause a rift in the family.
Studies have shown that advance care planning reduces stress on patients, their families and health care providers. It also results in 30 percent fewer malpractice suits, greater patient and family satisfaction, and a lower incidence of depression, drinking problems and other signs of complicated grief among survivors.
Ms. Stephens said that advance directives are “organic documents that can be changed at any time if circumstances or a person’s wishes change.” They should be reviewed at least once every 10 years, she added.
Complete Article HERE!
by MONICA WILLIAMS-MURPHY, MD
Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90-year old great grandmas. So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.
Medicine attempts to balance patient autonomy with the grand directive: “First, do no harm.” Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.
Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives.
This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well.
Mr. Gray was an 80-year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications, until 3 days before I saw him.
3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.
No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.
EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.
What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.
I tapped my foot impatiently awaiting the images of his brain to load up on the computer.
“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.
Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.
I spoke with the neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable — meaning, we expected him to die.
I let out a long sigh and said, “Yeah, that’s what I thought.”
Hanging up the phone, I braced myself to talk to the family.
When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.
No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.
Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.
Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes. If A happens then we can do B, but if C happens then B is not an option.
Then, finally, I laid the most serious decisions on them. How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures.
Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray).
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.
But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.
Suddenly, it became so clear to me that this should not even be their burden at all. In that moment, I grew to understand that it was wrong to even ask families to make such decisions in futile circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, ‘Thank you, I love you, and good-bye.’”
I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.
Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article:
The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.
The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures offered to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate. I support the position of the JAMA article: “Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.” (Like Mr. Gray, whom we expected to die within 24 hours). Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.
If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, like exclusion criteria for thrombolytics in stroke, then it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is not offered when it is considered medically contraindicated.
In the end, it is we doctors who need to shoulder the burden of CPR decision making in futile situations. It is the burden for which we were trained, the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family … it is a burden they are not equipped to bear and one they may never shed.
Complete Article HERE!