The following is excerpt from Modern Death: How Medicine Changed the End of Life by Haider Warraich.
Scientific advances have revolutionized the practice of medicine, yet it remains important to also realize that in many ways medical practitioners are intractably rooted in ancient and lapsed practices. Physicians, after all, are some of the few remaining professionals who continue to use pagers to communicate. The technology underlying many of the things we use on a daily basis, such as stethoscopes and electrocardiograms, is over a hundred years old. Many developments considered to be cutting edge are based on much older treatments, such as the malaria treatment that garnered its discoverer the Nobel Prize in Physiology or Medicine in 2015, which was based on a treatment first used 500 years ago. Even the electronic health record software that powers most modern hospitals is clunky, incoherent, and archaic by current standards. Much of how medicine is learned and practiced and how physicians interact with patients also remains frozen in time.
Unsurprisingly, physicians, while active on social media for personal use, have largely not incorporated new media into their practice. This is understandable: Many physicians are wary of trampling over patient privacy regulations, which have become increasingly stringent over the years. Yet the lack of active physician voices has left a huge void. People are more interested in their health, particularly close to the end, and frequently seek to interface on platforms other than the brief interactions they have with physicians in the flesh. The space physicians leave is filled by hackneyed self-promoting quacks and con artists who are only too happy to cash in on people’s fears and curiosity.
The discrepancy between people’s interest and doctors’ silence has been uniquely filled by a special group who straddle both worlds: doctors who also happen to have terminal illnesses. Kate Granger was 29, a physician training in geriatrics — the care of elderly patients — when the anvil dropped. While vacationing in California in 2011, thousands of miles away from her home in Yorkshire, England, she fell sick, and her husband, Chris, took her to a local emergency room. It was revealed there that her kidneys were failing. Further investigation revealed that there was something in her belly blocking urine from leaving her kidneys. That “something” was the rarest of cancers: a sarcoma that affects one in two million people. Initially, it was thought to be restricted to her abdomen and potentially treatable with surgery. How Kate learned other wise may not sound too foreign to many patients.
“I’m in a side room. I can hear every thing that’s going on outside. I’m in pain and alone,” she was quoted in the Daily Mail as saying. “A junior doctor [came] to see me to talk about the results of the MRI scan I’d had earlier in the week. I’d never met this doctor before. He came into my room, he sat down in the chair next to me and looked away from me. Without any warning or asking if I wanted anyone with me he just said, ‘Your cancer has spread.’”
Kate, now in her early 30s, did not take her illness lying down. It was clear that she had no plans to suffer in solitude. She started writing a blog and took to Twitter shortly after, where she accumulated more than 35,000 followers. She started an acclaimed campaign called #mynameis, encouraging more doctors and nurses to introduce themselves to patients and family members and build relationships with them. Even though she has now been brought back from the brink with chemotherapy, her cancer remains incurable and could recur at any moment. But Kate has plans for when that happens: She plans to live-tweet her final moments. “#deathbedlive will include tweets about my symptoms, treatment, fears, anxiety, expectations and how Chris is coping,” she wrote to me. “I hope to reflect on my life as a whole, my favorite memories and have an opportunity to thank every one for every thing they’ve done for me. In the process I hope #deathbedlive will start a conversation about death in society in general and provoke some discussions around end of life wishes within families.”
As a physician, Kate feels that access to a patient’s social media output can be very valuable to their physicians. “I would be very interested in their writing in case it helped me understand their experience of dying better. … If the patient is not receiving good care, this real-time feedback is invaluable in addressing concerns and improving things.”
Despite going public about her illness and wanting to live-tweet what ever the future has in store for her, Kate is still torn between sharing and holding back. “I think dying is an intensely personal experience and perhaps it should be just a time for the person and their loved ones, away from the sight of the wider world. I may feel pressure to share experiences as an expectation from the Twitter community, when perhaps I should be focusing on myself, Chris and my family.” Her views have evolved as she has also been hounded by internet trolls. On one occasion she “was told [she] was ‘not fit to practice as a doctor.’”
Physicians have become more open about confronting their mortality in public spaces. One of the greatest writers of our time, Oliver Sacks, who recently passed away, wrote several pieces after he was diagnosed with a terminal illness. After soaking in the splendor of the night sky, he wrote, in a piece in the New York Times Magazine on July 24, 2015, a month before his passing, “It was this celestial splendor that suddenly made me realize how little time, how little life, I had left. My sense of the heavens’ beauty, of eternity, was inseparably mixed for me with a sense of transience — and death.”
Doctors haven’t done a great job, however, of leveraging new media to their patients’ benefit, although there are some who hope to change that. Dan Miller, a professor of anthropology at University College London, is conducting a multiyear project looking at the use of social media by hospices. Among other things, Miller wants to break away from thinking of communications within the barriers of individual modalities such as Facebook, Twitter, and Skype. “We need to move beyond getting fixated on this media or that media alone,” he wrote to me in an email. “One person sees texting as ruling everything else, so you can speak by voice phone, meet face to face, organize an appointment but always text first to check if that is ok. Another person can’t respond to a doctor face to face but can write pages of email at midnight.” During the course of his research, Miller has found doctors to be particularly rigid in what they regard as the optimal way to communicate with patients: “Many of the doctors really don’t like to hear such suggestions and have very firm opinions as to what media should or should never be used. This is a problem for patients.”
Social media is opening up new avenues of communication for those close to death. It would not surprise me if people start using services like Skype to broadcast their deaths. To Miller, such an airing wouldn’t be very radical. “Why would your Skype example be different from the traditional deathbed scene that for many cultures is almost compulsory? It just allows people to be present who otherwise could not be.”
In my opinion, anything that opens a window into the dark room of death and dying in our society would be welcome. Anything that provides patients and family members more channels to communicate would be a step in the right direction. Medical people are always trying out new instruments, new procedures, and new medications, yet when it comes to new modes of communication, the only way a patient can see a physician is by finding a spot in a clinic or, worse, when they are admitted to the hospital.
If death is the enemy, it fights best in the darkness. Death stealthily commands and controls every aspect of our lives. Many talk about defeating death with drugs or devices, but these have only served to delay death and prolong dying. Perhaps the best way to beat it is to talk to death.
Death, the great enemy, is now seeing many facing off with unusual means and on very public forums. Death cafés and death salons, where people converse about death over drinks and food, have started opening up. People like George Carlin jabbed death with jokes, once unthinkable. College courses about death are becoming increasingly popular. One can even buy a watch, called a Tikker, that provides wearers a reminder of how much estimated time they have left to live. In Japan, young people can even go and have their pictures taken inside caskets, to see which one they would prefer if and when one becomes necessary. All of this forms part of what has been called the “death positive” movement, which seeks to open up death not only to those who are actually facing it, but to a younger generation who have not yet had to come to terms with their mortality.
Awareness of our mortality does more than remove the shroud of fear from death — it makes us kinder. One study showed that people who thought more about death were more likely to participate in selfless activities such as blood donation. Other research has shown that people who reflect about dying are more likely to donate to charities and have enhanced gratitude. And lastly, thinking of death, almost counterintuitively, reduces stress, and reducing stress is known to lead to a longer and healthier life.
While physicians do talk about death, they do so more candidly among themselves than outside their circle. We are trained to think of death as the greatest failure of all. I was once in the ICU when a fellow resident of mine was placing a feeding tube in a patient. The patient was very sick but seemed to be turning the corner. Midway during the placement, the patient became unresponsive. The monitor showed that his heart had gone into a malignant arrhythmia, and when the resident felt for the pulse, she found nothing. CPR ensued, but the patient could not be revived.
My friend, overcome with emotion, started to cry in the corner of the room. I walked her out into the waiting embrace of other residents. I knew how she felt. She felt that she had failed, and to this day I have that memory.
In every research study performed and every treatment evaluated, the only endpoint that determines success or failure is death. A treatment may make people feel much better, but if it doesn’t prevent death, it is shelved.
When it comes to themselves, doctors certainly don’t consider death the worst possible outcome. In fact, the vast majority of physicians value the quality of their life far more than the length of their life. This is reflected in the fact that physicians rarely want to have CPR performed on them if the need arises. This is true in young and older physicians. Certainly when it comes to themselves, physicians prefer a swift death to protracted dying.
Perhaps it is time that physicians, like some of their patients, start to have more honest and open conversations about death. This is easier said than done. Death has become highly politicized in the United States, and politicians frequently use things people fear to control them. While at one time physicians often spoke over their patients, the pendulum has now swung and physicians choose to stay mum at a time when their opinion would be of greatest value.
People have always talked of conquering death, and it has been assumed that death can be conquered by somehow averting it. To me, death derives its power from the deafening silence it induces whenever it enters a discussion. We would benefit from resuscitating many of the aspects of death that we have lost. Death needs to be closer to home, preceded by lesser disability and less isolation, but there is an important aspect of death that we have to do away with. The deaths we die cannot be truly modern until we bring the subject of death within the pale of conversation and start having calm, educated conversations about it in classrooms, bars, restaurants, backyards, and, of course, in the clinic.
This was an excerpt from Modern Death: How Medicine Changed the End of Life by Haider Warraich. It is published by St. Martin’s Press and is available for purchase now.