I studied medicine at Howard University, and he got an MBA from General Motors Institute. My career moved me around the country. He settled in Detroit, then Oakland. Throughout it all, we stayed in touch. As technology evolved, so did our communications: telephone, mobile phone, email, Facebook. I knew that he was gay long before he admitted it to our parents. I came to know and appreciate his boyfriends, the last of whom he married.

My brother’s widow is a good man. He did not deserve to experience the events surrounding my brother’s last moments. They took place on July 25. My brother, age 56, was having breakfast. During the meal, he told his husband that he did not feel well and left the table to return to his bed. Thirty minutes later, my brother’s husband walked in to find my brother dead. Hysterical, the husband dialed 911. A series of professionals arrive on the scene—the ambulance workers (couldn’t save him), the police (couldn’t help him), and finally the coroner. After determining there was no evidence of foul play, the coroner left. My brother’s husband was now alone in the home with his dead partner. All the professionals had abandoned him.

I am also writing this piece as someone who has spent the past 25 years thinking about aging, particularly among minority populations. I live in the world of public health research and move in research circles. I hear many public-policy discussions that focus on advance care planning, with phrases like “making your wishes known” and “patient choice” and “do not resuscitate” dominating the conversation. What I don’t hear enough is the simple word “compassion.”

In my professional life, my colleagues and I have a thousand variables in our statistical models to explain deaths that happen too soon. Compassion is generally viewed as beside the point—a view that isn’t a problem in the world of statistics. But the cold language of public health research—with terms like “explanatory risk factors”—has also crept into our day-to-day discourse. Engage in high-risk behaviors—smoking, heavy drinking, eating junk food—and the numbers show you’ll die sooner. You should have known better.

The distress of sickness or bereavement is not diminished by a recitation of bad habits. Anyone living in the space of grief and loss needs the kindness of others. Neuroscientists have begun to assess the physiology of emotions by examining the brain in different states. In an MRI of the brain, a blue color indicates serenity. When someone is in deep meditation, whole regions of the brain turn a deep blue. Can we not conduct analogous research into the effects of compassion on a grieving brain?

In my professional life, my colleagues and I also see numbers relating to geography and end-of-life care. Live in certain parts of the country and you’re much more likely to die in a hospital than at home. Where you live affects how you die; but how does it affect compassion? Do resources missing from the community where my brother lived determine how my brother’s husband was treated? I think so. If you live in the wrong place, if you die under certain circumstances, then neither you nor those who mourn your death can expect too much sympathy. My brother’s house was in a poor and crime-plagued neighborhood in Oakland. There was no compassion.

Using research, I can confidently say that many Americans, black Americans especially, refuse to engage in end-of-life planning or discuss treatment limits. Some researchers link such refusal to some specific historical grievance, such as the Tuskegee syphilis study conducted between 1932 and 1972. But there’s not much evidence for the link. I see something simpler. In kitchen-table conversations with my female physician friends, we share stories about our experiences with patients at the end of life. Abandonment is a central theme: the experience of having had a professional make a fateful pronouncement and then walk away, without compassion. Maybe some of us request fruitless treatment and intrusion because it’s the closest we can get to human sympathy—because the alternative, being alone and uncared for, frightens us even more.

For better or worse, I have never had a family member die after a prolonged decline. There was never any fighting over whether a machine should be disconnected. There was no selection from a menu of treatment options. During a 30-year period, I’ve had 10 relatives die from a variety of causes. Some of the deaths were “natural,” while others were the result of violent crime. But in all cases, death came suddenly. No wonder that the idea of “advance care planning” has felt remote and the idea of abandonment has felt acute.

Compassion shouldn’t be confined to the patient, either. The loved ones we leave behind when we die, people like my brother’s husband, deserve a more compassionate system. I was moved when, a short time after my brother died, I got a call from his physician. She expressed her sympathy and her puzzlement. His death came as a surprise, she told me. She had seen him a few weeks before and found nothing remarkable. This didn’t give me answers, but it gave me a lot of comfort. After the nonviolent deaths of family members, I’d encountered indifference. After the violent deaths, I’d encountered silence. This physician cared, and I was grateful.

Fortunately, I am part of a large, noisy family. Like most American families, we live scattered across the country. But in times of bereavement, we gather. Most of us have private sources of comfort and support, and no healthcare system can ever supplant that. But neither should any healthcare system leave a grieving widow alone with the body of a spouse and no one to call for help.

Before my brother died, I happened to be studying the health effects of bereavement. I call it The Mortality Project. Other researchers and I are developing ways to measure the injury associated with loss. Time does not heal all wounds. We are finding evidence that, when an adult loses a parent, there is a 10 to 20 percent increased risk for illness during the next 10 years. Grief can cause body changes that are indistinguishable from diabetes. Seeing a loved one die in the ICU and hospital is strongly associated with prolonged grief and post-traumatic stress disorder. We know that parents whose children die before them live in a perpetual state of mourning. Loss is an understudied and under-recognized public health threat, and a cruel system makes it even worse.

Should patients have more control over their final days? Yes. Does where you live determine how likely you are to have intrusive end-of-life care? Yes. We should try to have everyone live in a “patient-centered” neighborhood. But it’s also time to have everyone live in a compassionate neighborhood.

The post When We Die, Who Is Kind? appeared first on Zócalo Public Square.

But the reality is that most of us are going to die after spending the last three to 10 years of our lives suffering from increasing frailty and dementia—and America is totally unprepared for the number of people who will go through this in the next few decades as the baby boomers age.

“We haven’t thought about the medical care we need, or the medical care that we prefer—which isn’t often the kind of care we receive,” said Brownlee. This is true for the nation broadly and also for individuals and families.

Take a patient Brownlee called “Helen T.” Helen was admitted to Boston’s Massachusetts General Hospital emergency room with a broken hip; she was suffering from advanced Alzheimer’s and had an advance directive indicating that she didn’t want intubation or CPR. But her daughters were told by a surgeon that unless their mother was operated on, she would be in a lot of pain—and although the operation required intubation, the surgeon said that the advance directive could be reversed temporarily. Her daughters agreed to the surgery, beginning a two-month-long odyssey in which Helen was shuttled back and forth from her nursing home to the ICU to receive many different treatments beyond simply repairing her hip, including a catheterization, a cardiac stent, multiple intubations, treatment for pneumonia and a urinary tract infection, and a tracheostomy to insert breathing and feeding tubes.

Ultimately, a palliative care team was brought in, and Helen’s daughters agreed that her mother wouldn’t want any of this treatment; she died peacefully in hospice surrounded by her children and grandchildren.

“Every person involved in Helen’s care wanted what was best for her” and were aware of her advance directives, said Brownlee. But there were many points along the way where different decisions could have been made. Cases like these, she said, are about communication and denial.

Doctors present families and patients with choices that seem stark: death or treatment. But they aren’t upfront in letting people know when treatment won’t improve a patient’s quality of life. Nor do they normally present another option: to make the patient as comfortable as possible as he or she dies. The problem is compounded by various specialists who don’t see the patient as a whole person but instead see individual issues that can be resolved.

Nobody, said Brownlee, told Helen’s daughters, “‘We can make her comfortable without surgery’—nobody said that.”

“Why do people find themselves on this train that leads toward more and more and more [care], even if they sign an advance directive?” she said.

People think more is better when it comes to medicine—more drugs, more time in the hospital, more treatments. So part of it is patient preference. But a great deal depends on where you live, and what hospital you’re admitted to. Within California, there are huge differences between how patients are cared for at the end of their lives in the northern and southern parts of the state, Brownlee said.

According to Brownlee, in 2007 chronically ill patients at UCLA Medical Center spent an average of 14 days in the ICU in the last six months of their lives—more than three times longer than patients at UCSF Medical Center, and longer, too, than patients at Cedars-Sinai, who spend an average of 9.6 days in the ICU.

The use of palliative and hospice care has risen over the past decade, and fewer people are dying in hospitals, said Brownlee, but there remains a tremendous gap between the care patients want and the care they receive.

In 2003, 33.8 percent of patients in California died in the hospital. In 2007, that number dropped to 31 percent. But the average in the rest of the country is 28 percent. And in the Los Angeles area you are significantly more likely to die in the hospital or after spending time in the ICU than you are in other areas of the state.

It’s counterintuitive, but this regional variation is a result of greater availability of ICU beds and hospital beds. In areas where there are more beds per capita, more people are admitted to the hospital, and are thus more likely to die in the hospital. As a result of a post-World War II building boom, California (and Southern California in particular) has many small hospitals. Los Angeles has more doctors per capita than any other place in the country, said Brownlee.

And because of the economics of our healthcare system, hospitals, much like hotels, don’t make money with empty beds.

So how can we move toward a system that gives people the care they want, rather than the care determined by the region where they live or the number of beds in the nearest hospital?

“In my ideal world I imagine a health system in which patients no longer feel like widgets, and doctors no longer feel like factory workers,” said Brownlee. She wants to see “a world where doctors really talk to their patients,” where care shifts away from hospitals and into the home, and where primary care doctors have more time to treat their patients.

She also thinks we need more trust between doctors and patients. Doctors, she said, “see you as a walking lawsuit waiting to happen”—and you can’t trust someone you think wants to sue you.

Every time you go to the hospital or a doctor’s office, she advised the audience, you should think, “No decision about me without me.”

She also said that a fundamental shift is needed in how patients evaluate the care they receive; we tend to think that the doctor who gives the most tests and uses the most technology cares the most.

At stake isn’t just our health and comfort but also the economic future of the nation, said Brownlee—which is why we all need to start talking and thinking about death now, before it’s too late.

In the question-and-answer session, audience members shared their experiences with terminally ill and elderly family members and asked Brownlee where to go for more information on regional variations in end-of-life care.

Brownlee said that she is preparing reports for the California HealthCare Foundation on end-of-life care, cancer care, and variation rates of certain types of procedures all over the state; these will be available on the foundation’s website early next year.

Is there any financial incentive for hospitals not to offer palliative care? “Hospitals are paid for offering more care, not better care,” said Brownlee, adding that the Affordable Care Act will change that to some degree—but that patient demand is what will ultimately force hospitals to offer more palliative care.

Brownlee believes that change can come to America’s end-of-life healthcare. “It’s going to take a lot of patient voices, and a lot of leader physician voices,” she said.

The post You Might Wanna Die Elsewhere appeared first on Zócalo Public Square.