Keywords: end of life; advance care planning; health care decision making
Citation: Zitter JN. The essential ingredients for good medical decision making. J Participat Med. 2010 Jun 28; 2:e1.
Published: June 28, 2010.
Competing Interests: Dr. Zitter is a founder, medical director, and shareholder at Vital Decisions, a private company performing counseling to enhance medical decision making for patients with life-limiting illness.
I helped someone avoid a terrible death last Thursday. Don, a 31-year-old Home Depot salesman, had been suffering from cancer for eight years. Although he didn’t yet realize it, he had entered the active phase of dying when I met him on the 14th floor of Parnassus Hospital as he returned for his second admission in as many weeks. I was his palliative care physician, brought in to help manage his pain and crippling symptoms.
The previous week, Don’s thorax had been hastily punctured with bilateral chest tubes as his acute dyspnea workup revealed new malignant pleural effusions. I met him 2 days after the tubes had been pulled. His effusions had re-accumulated, and then some. Don, a former Marine who served two tours of duty in Iraq, was gasping for air. He was also suffering from severe nausea and constipation, and held a basin up his mouth to catch the vomitus from his constant retching. His belly was distended, his face was gray, and his head was bald. A tall and broad-shouldered man, he had lost all his bulk; the angel he’d had tattooed on his shoulder to mark his fifth anniversary free of cancer had shriveled. His wife kept gently wiping the spittle off his face.
Don’s parents had flown to his bedside three days earlier. Together with his wife, they were supporting him through what they believed would be a six month battle to keep him alive long enough to enroll in an experimental trial testing a new melanoma drug.
His doctors privately had their doubts that he could survive the six months, but had supported the patient’s decision to “fight ’til I’m in the grave.” He was just 31, newly married with a lovely wife, and willing to do anything that might help his chances for survival. Treatment after invasive treatment had been tried over the previous several months of his rapid decline, but to no avail. In addition to Don’s extreme shortness of breath, he suffered excruciating pleuritic chest pain with every breath at the site where last week’s chest tube had been. The nephrologist had also been called to evaluate the cause of his recent onset of acute renal failure. Don’s father, a tall and commanding military professional, pulled me into the hall and asked me, “Where are we at this point?”
The question was vague and could have meant that he was wondering what the next treatment would be. But his eyes told the truth. This father could not continue to witness his son’s suffering. He was starting to doubt that the cancer could be beat, which was causing him to lose faith in the treatment. Until now, he had been supporting his son as he went through a battle, with injuries and casualties accepted as a necessary part of any war. But now he was starting to question whether there was a benefit to the suffering. If there wasn’t, he needed to move to a defensive posture and stop the pain.
I responded with a series of questions, rather than answers. I didn’t have all of the information he needed, but helped him pull together information about his son’s medical status, available treatments, including their risks and benefits and, most importantly, about Don himself. I helped him determine what information he needed to obtain from the oncologist about his son’s prognosis, treatments, and about what might lie ahead for him. We talked about Don—his hopes, his plans, his wife. He told me that Don was proud, strong, and a real fighter. But, he said, Don also knew when to retreat. He wouldn’t stay in a battle if he was losing his men.
As I huddled in the hallway with Don’s father, helping him to understand these questions, the nephrologist emerged from the room. This consultant, who was focusing only on the kidney, reassured the father that dialysis could wait. But Don’s father, armed with a new need for clarity, asked whether Don’s kidney failure would allow him to receive the lifesaving, experimental chemotherapy that was being planned. The nephrologist admitted that the kidneys were irreversibly damaged due to his rapidly progressing cancer and that it was almost impossible to imagine that Don would ever be admitted into a clinical trial in the presence of severe renal failure. He also added that he couldn’t imagine that Don had more than a short period of time to live.
This was the moment of clarity Don’s father needed. He drew a deep breath, wiped a tear from his eye, and thanked us for helping him to move forward. The battle was lost and the time had come to concentrate instead on assuring Don’s comfort and dignity.
The next step was to discuss the situation with Don’s wife and to bring the oncologist into the discussion. The oncologist was the primary person who would determine the course of Don’s care. He had suggested waiting a few days before making any major decisions which, he claimed, would allow Don’s condition to declare itself and solidify the next steps. However, at this point it was becoming clear that we didn’t have a few days. Don was failing rapidly. If the current course were to be maintained, he would require a ventilator and medication to support his blood pressure within a few days. This decision would have guaranteed that he would die hooked up to machines in an intensive care unit. I called the oncologist’s office and requested that he be interrupted from his busy clinic. After a long wait, he came to the phone. “I will be there the day after tomorrow to talk to the family. Anything urgent?” I explained that the family needed some clarity on his condition immediately, in order to make sure that the current plan was still appropriate. “Is there anything else to try,” I asked him, “anything that will make a significant difference in his clinical course?” The oncologist hesitated. He couldn’t bring himself to acknowledge that there were no further life-prolonging treatments to offer. He slowly began to list a few possible regimens to try, but his voice trailed off. Don’s wife and father, listening in to the three way conversation, looked on hopefully. I probed further. “Are any of those treatments used in patients with kidney failure? Even if you try them, will they be likely to help?” The oncologist had no choice but to state the obvious. Don was dying and there were no further treatments for the cancer. That was Don’s wife’s moment of clarity.
She sobbed and said she didn’t want him to suffer any longer. Wednesday evening we discussed how we would manage Don’s pain, vomiting, and shortness of breath. By Thursday morning, he was able to speak again with his wife and parents. He received the news about his condition with grace and, with relief in his voice, said that he wanted to go home. Unfortunately, he never left the hospital. After an unexpected complication, he died at 3:30 the next morning, free from pain, at peace, and surrounded by his family.
In America, we often do a terrible job of managing the death process. Some 80% of Americans die either in the hospital or in nursing homes, deprived of the knowledge and information they need to manage their own deaths, unaware of their options. However, if asked, patients tend to reject aggressive treatment in favor of gentler care aimed at minimizing symptoms.
The cost of this end-of-life care is often exorbitant. The 5% of Medicare patients who die each year consume almost one-third of all Medicare expenditures. And one-third of these costs are incurred in the final month of life.
Contrary to popular belief, terminally ill patients who openly discuss treatments with their physicians tend to choose to accept fewer treatments but do not die sooner than those receiving more interventions. Additionally, surveys of family members, nurses, and doctors of those who’ve received palliative care report significantly better deaths than their counterparts whose family members or patients received more aggressive care. Patients who’ve had conversations with their doctors regarding end-of-life care tend to die in the care of a hospice organization , usually at home, with a higher level of comfort, satisfaction, and quality of life than those who die in the ICU, hooked up to ventilators, catheters, and feeding tubes.
Unfortunately, these types of conversations between patient and caregivers tend to be sporadic and inconsistent. Physicians tend not to initiate end-of-life discussions for a variety of reasons. These may include concern that they are robbing the patient of hope, feeling that they lack the time or energy for an emotional conversation, and that they have inadequate training about how to address death and dying.
Furthermore, the current payment system often impedes these conversations. It rewards physicians for performing procedures. At the same time, there is no compensation for conducting end-of-life care planning conversations and successfully navigating the death process. A patient signature on a hastily completed informed consent form too often substitutes for realistic, patient-centered discussions of the benefits and burdens of a treatment.
Patients and their families may also share some of the blame for this outcome. They may be reluctant to initiate end-of-life discussions with their doctors, driven by fear, exhaustion, discomfort with the medical system, and the desire to believe that hope is alive. The patient–doctor relationship often dances around the inevitability of death with the fantasy that disease can always be quelled by another treatment.
How to fix it
How do some patients escape the suffering so pervasive in our system at the end of life? What did they do differently?
Medicare data demonstrates that patients with lower socioeconomic status are more likely to receive nonbeneficial, intensive treatments than patients with high socioeconomic status. Prigerson’s work suggests that patients whose doctors spoke with them, regardless of the details of the conversation, tended to forego high intensity treatments at the end of life. Furthermore, many patients prefer to plan their end-of-life care, knowing that it will likely make their death easier on their family members, and will help avoid imposing impossible responsibilities and guilt, including a long and difficult dying process.
I believe there are three ingredients needed to successfully navigate this increasingly complex terrain: activation, information, and decision support.
“Activation” means motivating patients and families to take an active, planned role in determining treatment. Activated patients and family members won’t wait for their doctors to introduce end-of-life planning. Instead, they will initiate it themselves. They accept their role as a decision-maker and they are unwilling to abdicate this responsibility to their doctors. Most people, however, do not display such proactive behaviors in this setting. Rather, people tend to trust their doctors to lead them through the foreign terrain of treatment and, eventually, death.
“Information” includes a clear understanding of the pros and cons of a particular therapy, with consideration of the medical condition and prognosis. When this information is lacking, they remain dependent on the physician and his decisions.
“Decision support” is the most crucial of these three ingredients. Even with an ‘activated’ mindset and adequate information, it is a rare patient who can successfully maneuver through our medical system, especially when sick and overwhelmed. Most people need ongoing support in order to create and refine a treatment plan with their physician. It is not something that the physician typically has the time or expertise to create. Strategies can include creating lists of direct and pointed questions for the doctor, identifying personal priorities and goals, and putting information and preferences into a framework to help with decision making. Visualizing the options helps patients understand the importance of driving the decision making and solidifies their activation. These choices are too personal to leave to one’s physician.
How might patients and families gain access to this type of support? Unfortunately, there are limited options available to assist patients with life-limiting, progressive medical disease in becoming proactive and involved decision makers. Three options include palliative care, complex case management, and private counseling services.
Palliative care medicine is a relatively new specialty whose mission is to enhance patient-centered care. This refers to all aspects of customizing health care to a patient’s values and preferences, whether by determining plans for future management or by managing symptoms. Given that most patients are referred late in the course of their disease, palliative care usually focuses on managing existing symptoms rather than avoiding unnecessary future suffering. This approach remains a relatively foreign concept for many providers. In addition to a low and late referral process, these services are not available in many care settings. Only 55% of hospitals with more than 100 beds have palliative care services. Moreover, this type of care is site specific and requires planning and coordination for continuation as an outpatient, which often leads to patients “falling through the cracks.”
Complex case management is a resource which may be provided by some health care plans. Its goal is to organize seamless care for the sickest patients, regardless of their place of care. However, it is not available to all; when available, it usually does not address decision making but aims to facilitate provision of medical and support services.
Private counseling services may be available to some patients. Many oncology practices have counselors who help by providing decisions support. Other programs deliver decision support by telephone or other media to patients in their last year of life. Such programs can support access to decision support regardless of location of care and residence.
Patients and their loved ones, by taking on the role of activated and informed consumers, can provide a much more effective partnership with their caregivers that will greatly benefit the outcome during end-of-life care.
What Might Have Been
It’s impossible to know exactly what would have happened to Don, who died in comfort amidst his loved ones, had he not had access to palliative care. It is likely that he would have been moved to the Intensive Care Unit as his body continued to fail, in an attempt to maintain organ function. He might have been hooked up to a ventilator, unconscious, with tubes entering his chest, nose, and veins. He may never have been able to speak to his family again, to acknowledge to them that he loved them and appreciated their presence. The noise from the ventilator and the constantly beeping alarms would almost certainly have drowned out the voices of his family, telling stories of his childhood as they gathered around his bed. In the ICU, there would have been no place for his family to sit, no place for them to eat the meals that kept them strong as the night wore on.
We do know that in the hospital’s comfort care suite, Don’s final stop before death, his wife was able to lie next to him for most of the night, her arms around him, feeling for each breath, whispering words of love and support. His mother, at first hysterical with grief, was able to calm herself in the knowledge that his pain and suffering were under control. When death is coming, families and patients need a place to gather their strength and maintain their peace and dignity. Patients and their surrogates must be activated, informed, and proactive in order to achieve this. Decision support services are a necessary part of the process, whether in the form of hospital-based palliative care services, health plan case managers, or privately run counseling services. Don happened to be in the right place at the right time for good decision making, and he was able to spend precious time with his loved ones before his death.
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Copyright: © 2010 Jessica Nutik Zitter. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.