Inside the Providence Portland Medical Center, a short distance from the river splitting Oregon’s biggest and trendiest city, a group of doctors, social workers and a chaplain gathers for morning rounds. They take their seats as a woman playing a harp urges them to relax and focus for a few moments. Peaceful chords fill the room. Some of the staff close their eyes. Once finished, she asks the team to “preserve that mellowness as you go through the day” and then gently laughs as she flips on the harsh fluorescent lights, knowing that she has transformed the room back into a beige-walled, industrial-carpeted hospital office.
Harp music is not a standard accompaniment for medical rounds, but this is not a standard medical team. It is part of the hospital’s department of palliative care, a relatively new medical subspecialty that, rather than treating a disease, tends to patient comfort—focusing on alleviating pain, both physical and emotional, as well as the social conditions that make managing illness difficult. It is a holistic approach to medical treatment, and proponents say it can address some concerns individuals express about end-of-life care, including pain and a perceived loss of dignity.
The 483-bed hospital traces its roots to the 19th century, when the Sisters of Providence opened schools and hospitals in what was then the Washington Territory. Today, thehealth network offers “the full continuum of health care, from birth to end of life.” When it comes to end-of-life care, this includes opportunities for patients to enlist the help of the palliative care team to manage their care with doctors, social workers, chaplains—and sometimes even the harp player.
“Palliative care is comfort-focused care, symptom-based treatment,” says Dr. Shorin Nemeth, the head of Providence’s palliative care team, called Connections. “Whether it’s psychological symptoms, physical symptoms, spiritual symptoms or other symptoms, it’s really asking the question, how do we give this patient the best quality of life with the time that they have?” He is quick to note that palliative care is broader than hospice care, which may be more familiar to many Americans. Whereas hospice care is meant for someone with fewer than six months to live, palliative care can be appropriate for any patient with a chronic condition, regardless of life expectancy. Indeed, palliative care is becoming increasingly important as technology allows people with serious chronic conditions to live longer than ever before. The dilemma is that reliance on such technology can result in a greatly diminished quality of life for patients. For some, ending one’s life early with a cocktail of prescription drugs may seem more appealing than living attached to tubes or in intense pain.
That is why I’m here in Portland.
Providence Portland Medical Center is one of eight Catholic hospitals that are part of Providence Health & Services in Oregon. It operates in the first state that gave doctors the authority to prescribe a lethal dose of medication to terminally ill patients who desire to end their lives early.
The law remains popular, though the number of Oregonians actually using it is quite small, according to data from the state’s public health department. Doctors in Oregon, home to about four million people, have written 1,749 lethal prescriptions since 1998, of which 1,127 resulted in death. The number of prescriptions has trended upward overall in recent years, but critics call the accuracy of this data into question because it depends on the doctors’ self-reporting.
Discussion about physician-assisted suicide was once taboo, but the practice is gaining support across the country. The Death With Dignity movement has recently claimed victories in legalizing the practice in California and Colorado, joining Oregon, Vermont, Washington and the District of Columbia. Encouraged by their success, advocates plan to introduce bills and ballot measures in more than a dozen other states in the next few years. (Physician-assisted suicide, dubbed Death with Dignity or assisted dying by proponents, is not euthanasia. That is a technical term that applies only to a doctor administering lethal drugs, a practice that is illegal in the United States.)
Critics say that among other concerns, like the potential for abuse and the moral questions surrounding taking one’s own life, the laws are too libertarian. Instead of addressing the root causes why someone might fear a lack of autonomy, like isolation or a lack of familial support, critics say, these laws present an early death as the easiest option. In Washington, D.C., for example,African-American leaders worried that physician-assisted suicide would ultimately harm low-income and minority residents, many of whom are already wary of the U.S. health care system because of past injustices. They voiced concern that black residents, accustomed to having less access to medical treatment, may be more likely to consider ending their lives when facing a terminal illness.
But life-prolonging medicine has itself become more extreme in recent years, as new technology allows people to live on even as organs fail. A quick walk through any intensive care unit inevitably finds patients hooked up to machines that artificially provide oxygen, food and clean blood, sometimes for weeks and months on end. Many people look at this possibility—made particularly vivid in “Extremis,” a recent documentary on Netflix chronicling palliative care in Oakland—and shudder.
It is not surprising that proponents of physician-assisted suicide see the practice as a desirable alternative. They say it offers patients a death free from pain through a process that they control. Stories used by those advancing the cause often portray final days spent with loved ones at home, in safe and comfortable surroundings. They say it beats spending your final days with tubes shoved into your body through natural and manmade holes, your arms strapped to a hospital bed as machines beep loudly and strangers prick and prod you until your body finally gives up.
However, the U.S. bishops have long pointed to another way. In their 2011 statement “To Live Each Day with Dignity,” they wrote: “[M]any people fear the dying process.... Our society can be judged by how we respond to these fears.... When we grow old or sick and we are tempted to lose heart, we should be surrounded by people who ask, 'How can we help?' We deserve to grow old in a society that views our cares and needs with a compassion grounded in respect, offering genuine support in our final days. The choices we make together now will decide whether this is the kind of caring society we will leave to future generations. We can help build a world in which love is stronger than death.”
More recently, the Vatican weighed in on end-of-life medical care when it released a statement on June 29 about the case of a 10-month-old baby in England who could not breathe, eat or move on his own. Courts had ruled that it was in the best interests of the baby to be removed from life support and that he be allowed to die, even though his parents had raised funds to pay for experimental medical treatment in the United States.
“The proper question to be raised in this and in any other unfortunately similar case is this: What are the best interests of the patient?” Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, said. “We must do what advances the health of the patient, but we must also accept the limits of medicine and…avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”
Regarding the court’s involvement, the archbishop said, “If the relationship between doctor and patient…is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.”
Addressing Loss of Autonomy
In 2013, the Pew Research Center polled Americans about theirviews on the morality of suicide. A majority of U.S. Catholics, like Americans overall, said suicide is moral when someone “is suffering great pain and has no hope of improvement,” though only about one-third of Catholics and Americans overall said there is a “moral right to suicide” for individuals who feel they are an “extremely heavy burden” to their families.
Similarly, a 2015 Gallup poll that tracks support for physician-assisted suicide found that 68 percent of Americans supported physician-assisted suicide, up from just 52 percent in 1997, when Oregon’s law went into effect. Gallup frames its question in terms of individuals “living in severe pain.” As pain management has become better understood in recent years, however, those who choose to take advantage of physician-assisted suicide frequently cite other concerns as their primary motivation.
A 2015 Gallup poll that tracks support for physician-assisted suicide found that 68 percent of Americans supported physician-assisted suicide, up from just 52 percent in 1997.
According to statistics compiled by health departments in Washington State and Oregon, high percentages of individuals who use physician-assisted suicide said before their deaths that they were concerned with losing their ability to enjoy life, their dignity and their autonomy. Addressing that loss of autonomy is where palliative care advocates say they can make the greatest difference—showing that, contrary to conventional wisdom, terminal illness does not necessarily mean giving up control.
Physician-assisted suicide advocates have been successful in showing how the practice can lead to a “good” death, in stark contrast to the way many people spend their final days in intensive-care units. Supporters of the Death With Dignity National Center, whose national office is in Portland, say that for some patients, care by doctors and other hospital staff can be inadequate for many end-of-life issues. Pain or a loss of personal autonomy may be too much to bear and they say that terminally ill patients should have a right to end their lives if they want.
“If you look at...a state like Oregon, palliative care and Death With Dignity have risen in tandem and in strength and in ability to provide folks a whole range of options at end of life,” says Peg Sandeen, a social worker who leads the Death With Dignity national office. She says the Death With Dignity movement is based on “choice for everyone,” adding, “death with dignity and palliative care are not two separate things. They actually work together.”
But M. C. Sullivan is convinced that quality palliative care is a better alternative to death with dignity laws. A nurse, bioethicist and attorney, Ms. Sullivan now works on end of life issues for the Archdiocese of Boston.
In 2012, physician-assisted suicide advocates tried unsuccessfully to bring an Oregon-style law to Massachusetts by means of a ballot referendum. During the campaign, the archdiocese partnered with several other groups, including disability rights organizations, who were afraid that the law would put the elderly, the disabled and other vulnerable populations at risk by pressing them to request lethal doses of medication.
Voters in Massachusetts narrowly rejected the ballot measure in 2012, 51 percent to 49 percent. But advocates have promised to reintroduce it in 2018, and Ms. Sullivan saysthat she is not sure how it will fare the next time around. She says those who do not support assisted suicide need to sharpen their storytelling skills quickly.
The act of dying, she says, sometimes results in understanding loved ones in entirely new ways, opening up channels of communication that were previously unavailable, and those who choose to end their lives early could miss out on those graced moments.
“How do we capture those moments, the relationships that form within the urgency of impending death, occurring in days, weeks or months?” she asks. “As life changes, the filter through which we see things should change. We’ve got to get better at communicating that.”
“Do Everything You Can”
Back in Portland, I’m speaking to Dr. Nemeth in a conference room inside a building that houses nursing students and, until 2011, also housed the sisters who founded and ran the hospital for 70 years. Speaking slowly and deliberately, he explains that palliative care teams are first and foremost “patient advocates.” In other words, they are trained to ascertain what patients and their families hope to achieve through their medical care and then push for those results, navigating an often unwieldy and sprawling maze of medical choices.
“Our one purpose, outside of symptom management, is to find out what that patient would say if they were standing in front of us, and as it relates to them. Whether or not we agree with it, we need to advocate for the patient,” he says, alluding to cases where family members or patients might seek aggressive treatment even if it is unlikely to bring back a quality of life the patient would find acceptable.
“Families will often say, ‘I want you to do everything that you can,’” he says, thinking of the many difficult conversations he has had over the years with families who were not equipped to deal with the impending death of a loved one. “But what they really mean is, ‘I want you to do everything you can to get my family member the life back that they had before this happened.’ Those are two markedly different lines of thinking.”
Often, especially with older patients, restoring the prior quality of life is not possible. Keeping a person alive with machines, often resulting in limited mobility or cognition, might not be at all what the patient had in mind. Better palliative care immediately after a diagnosis, when a patient is still lucid, Dr. Nemeth says, could lend clarity during those difficult moments when a patient is unable to speak for himself or herself.
As the Death With Dignity cause continues to advance, Catholic hospitals, which care for one of every six patients in the United States, will face challenges in treating patients who request such services. There are no easy answers at the moment, and with changes in the law coming quickly, Catholic leaders are scrambling to consider the ethical ramifications of such requests.
As the Death With Dignity cause continues to advance, Catholic hospitals, which care for one of every six patients in the United States, will face challenges in treating patients who request such services.
In Canada, for example, where physician-assisted suicide was legalized last year, a group of Catholic bishopsreleased guidelines that, in part, ask priests to discourage Catholics who request a prescription for lethal levels of medication from going through with the process. However, if a person decides to take the pills and end his or her life, the bishops said, he or she could still be given a Catholic burial; this conclusion has led to pushback from some pro-life activists.
Patients at Providence Portland Medical Center have asked for information about physician-assisted suicide, putting staff at the Catholic hospital in a tricky spot. According to a hospital ethicist, hospital staff are trained not to shut down the conversation but instead are encouraged to talk to the patient about why he or she has made the request.
“When a patient asks about death with dignity, we see that as an opportunity for discussion,” explains Nicholas J. Kockler, who holds the Endowed Chair in Applied Health Care Ethics at Providence Center for Health Care Ethics. “There is no gag order. Rather, we really work up what the patient’s needs are and offer a package of what we can do.” That package often includes consultations with the palliative care team, who can help facilitate conversations with patients and their loved ones about how they want to experience death.
“We don’t say, ‘Sorry, we can’t talk about that. End of discussion,’” he says. “That would constitute patient abandonment, and it doesn’t reflect our values.”
If a patient nonetheless decides to go ahead and seek information elsewhere about physician-assisted suicide, hospital staff cannot make referrals or facilitate that process. If the patient decides to end his or her life early, at home, medical and nursing staff cannot be present, though the chaplains and social workers can meet with the deceased patient’s family as they would for any other patient.
A Song and a Prayer
In the Providence Center’s oncology department, Margaret Mary Jones sits in an exam room, dressed in a tie-dyed purple shirt, black stretch pants and sneakers with neon-pink laces. She is tired from the treatments for her incurable lung cancer, but Mrs. Jones says she will not allow her fatigue to cause her to miss her meeting with Michael Dupre, a palliative care nurse practitioner. He helps her manage her medications, assesses her level of comfort as she continues treatment and listens patiently to her concerns about billing and insurance.
“The doctors are busy and we know that. But Michael takes his time. I’m able to have an hour appointment if that’s what I need,” Jones says. Her husband, Roscoe, seated next to her in the exam room, echoes those sentiments, praising how the doctors and palliative care team complement each other’s work.
“He’s very inquisitive, questioning about certain conditions and how she’s feeling and what her symptoms are,” Mr. Jones says of Mr. Dupre. “The process is usually 20 minutes to a half hour, and it seems like he’s able to pinpoint better and prescribe and help us adjust medications that really work for her.”
Down the hall, Rachel Sanborn, co-director of Providence’s thoracic oncology department, says she recommends palliative care to many of her lung cancer patients because the team is equipped to unearth concerns that patients and their families might be reluctant to bring up with her.
“There’s a tremendous amount of emotional distress that goes with coping with the dying process. Not only for oneself, but for the family, maybe for kids,” Dr. Sanborn says during an interview in her office, where spare white coats hang in dry-cleaning plastic bags on the back of her door.
“Having the counseling support is very, very important for that whole body–mind connection that we have,” she continues. “That very powerful, raw emotion that comes with dealing with cancer—sometimes people are more reluctant to talk about certain things with their doctor because they don't want to show vulnerability.”
A 2014article from The New England Journal of Medicine about the benefits of palliative care for patients nearing the end of their lives echoes Dr. Sanborn’s belief that a robust, interdisciplinary approach to medicine benefits patients.
“Cultivating culturally and spiritually sensitive care is central to the palliative approach,” the authors write. “Clinicians should understand how spirituality can influence coping, either positively or negatively.”
At Providence, that’s where the harpist and chaplain come in.
Raya Partenheimer and I meet downstairs in a room that serves as a sacristy for the hospital chapel. She is seated in front of her transportable wooden harp. Part of the hospital’s spiritual care team since 2002, she works alongside the several chaplains who staff each floor. Soft-spoken and enthusiastic about her small but growing field, she thoughtfully considers my question about what constitutes success for her interactions with patients. She tries to dispel the notion of success as meeting a predetermined goal.
One of the strengths of palliative care as a whole is that the staff has more time to consider the needs of the patients.
“A lot of people rest while I’m playing. Sometimes people who can’t sleep, they sleep,” she says. Most of her appointments with patients last from 20 to 45 minutes, though it can be far longer when a family requests that she play in the background as a loved one is removed from life support.
One of the strengths of palliative care as a whole is that the staff has more time to consider the needs of the patients, as exemplified by Ms. Partenheimer’s patient appointments.
“I am in the room in a different way than the other people are,” she says, and she notices subtle changes in patients over a period of time. During rounds, she updates the team on one patient who danced during a previous session but who could not get out of bed during a more recent visit. Ms. Partenheimer has a way of connecting with patients who might be intimidated by doctors or nurses.
Ms. Partenheimer says it is not unusual to be in a hospital room with a patient and the family when a doctor pops in to see if anyone has questions. Often, the family will say they do not, but when the doctor moves on, they open up to her about what they are experiencing. In turn, she can bring that information back to the palliative care team for follow-up.
Another way to sketch a full picture of a patient is by talking about spiritual concerns, even in a city as proudly unchurched as Portland. To that end, the hospital recently assigned a full-time chaplain to the Connections team.
Isaac Brown was a Benedictine monk for 25 years, spending many of them working with dying patients in hospice. Now that he is working in palliative care, he says, his “antenna is always searching for spiritual pain.”
In his assessments of patients, he tries “to meet them a little bit, just to see who they are. That’s important.” As with Ms. Partenheimer, patients often open up to social workers or chaplains in ways they might not with doctors or nurses.
“Is the patient at peace with themselves? Is the patient at peace with their family around them?” Mr. Brown asks, recalling some of the questions he considers during consultations. “If they have a faith or spiritual practices of coping, is it working?”
He shares the same goal as the rest of the palliative care team: caring for the patient. “My job is, if appropriate, to flush out some of that existential pain and see how it can be addressed.”
The Politics of Care
Though increasingly part of mainstream medicine in many hospitals, palliative care is not without controversy, especially in the hyperpolarized environment of American politics.
A common component of palliative care is helping patients talk with their families about how they want to spend their final days and then writing those wishes down in legal documents called advance care directives (or, alternatively, forms for physician orders for life-sustaining treatment). These documents, advocates say, can help patients die in a way that respects their wishes, like being at home with loved ones instead of being in an intensive care unit. After prolonged conversations with doctors, family and sometimes members of the clergy, patients will sign forms that instruct medical teams not to employ extraordinary care to keep them alive should that result in greatly diminished physical capacity.
Mr. Brown, the chaplain, sighs when I ask about frustrations that come with the job. He says he frequently counsels families who do not know what their loved ones want at the end of life and have no decision maker.
“That is very frustrating, because I see the patient’s just suffering,” he says. “Sometimes I think the frustrating fact about medical intervention today is that we can do too much, we can keep people going, their bodies going…. We know how to do that too well, without taking into account the quality of their life.”
The debates about when to stop treatment or “pull the plug,” to use the more colloquial phrase, are often colored by factors beyond straightforward medical data. The patient could be the primary means of income for a loved one, through a pension or a lucrative career. Perhaps she has overcome medical obstacles before, and her family thinks waiting one more day will bring a miracle. Doctors sometimes talk about the “child who flew in from the other coast,” perhaps estranged from a dying parent and hoping to make amends by heroically (in his mind) prolonging care well past the time when it could do his parent any good.
Untangling these narratives takes time, sometimes weeks or months following a diagnosis. Dr. Nemeth says he often spends up to two hours with a single patient in a single meeting, considerably more time than an intensive-care doctor might allot to a single meeting. And time, like everything else in U.S. health care, is expensive.
Medical billing is a complex calculus, but to put it simply, hospitals survive by billing individual procedures to Medicare and insurance companies. Historically, insurance companies have been reluctant to pay for the range of services needed to provide quality palliative care services, including spiritual care, social work or conversations about when to halt medical care for those with terminal illnesses.
But that thinking has begun to change. U.S. Representative Earl Blumenauer, a Democrat from Oregon, introduced language into the Affordable Care Act in 2009 that would reimburse doctors for having these time-consuming conversations with families. Supported by physicians and public health experts as a commonsense approach to protect patients and drive down unnecessary medical spending, it was largely seen as a noncontroversial component of a very controversial bill.
Fresh from an election loss to President Barack Obama, the 2008 Republican nominee for vice president, Sarah Palin, dubbed the reimbursement proposal a creator of “death panels” and helped to set off an anti-Obamacare firestorm that hounded members of Congress as they considered the landmark legislation.
After a summer of confrontational town hall meetings, which coincided with the rise of the Tea Party, congressional Democrats caved in to the pressure and removed Mr. Blumenauer’s proposal from the final bill.
Many palliative-care doctors were aghast at Mrs. Palin’s mischaracterizations, upset that she had hampered progress on a vitally needed component of their treatment. Fast-forward a few years, and Dr. Nemeth is laughing as he explains how he dealt with the setback.
“We are not Sarah Palin’s death squad. We’re not anything like that,” he jokes, recalling what he said to skeptics at the time. But, he says, the damage was done. As evidence, he points to aCNN debate this past February between Senators Bernie Sanders and Ted Cruz about the future of American health care.
During that exchange, Mr. Sanders called for reducing wasteful health care spending in the United States, which spends far more money per patient compared to any other wealthy country, often in the final weeks of a patient’s life.
In response, Mr. Cruz, a protégé of Mrs. Palin, lashed out at palliative medicine, mischaracterizing it once again, this time accusing European doctors of killing patients rather than offering expensive care.
“The elderly here, when the elderly face life-threatening diseases, they’re often treated in the intensive-care unit. In Europe, they’re often put in palliative care, essentially doped up with some drugs, and [told], ‘Well, now is your time to go,’” Mr. Cruz said.
As Dr. Nemeth notes, the “death panel” boogeyman just won’t die.
“That whole persona was really damaging to palliative care. It’s not at all about what we are,” he says.
The Holistic Approach
During morning rounds, when the harp player has finished, the palliative care team discusses the intricacies of each patient assigned to their care, sharing updates and assigning tasks for the day. Each member of the team weighs in. The social workers talk about family dynamics, the chaplain notes that one family did not know who the primary decision maker was for their unconscious loved one, the doctors review charts from other physicians, and the harp player, called a music thanatologist, describes how one particularly sick patient is deteriorating. Through the back and forth, the team tries to create as complete a picture of each patient as possible, which will inform the course of care.
There are, of course, several conversations about medicine as it is usually understood. The trio of doctors are shocked that one patient’s methadone was stopped cold turkey; their dismay grew when an extensive list of medications appeared to show no cohesive plan to help deal with the patient’s incurable cancer. That is something they can help their colleagues in various specialties see more clearly—and in the process create a more holistic approach to care.
Then there are the nonmedical issues, like how to deal with a large family unsure of how to proceed with a dying loved one, as well as the homeless patient with a chronic condition who shows up to the emergency department “to be rescued” every few months, after ignoring medical advice from the previous visit. These repeat stops at the emergency room are expensive, for both the patient and the hospital, and the team discusses ways to serve the patient’s needs better.
Given political trends, it is very likely that physician-assisted suicide will continue to be legalized throughout the United States in coming years. Patients with terminal illnesses will increasingly view it as a viable option. That said, a passage from the New England Journal article remains true.
“Palliative care in the ICU has come of age,” its authors conclude. “Ensuring that patients are helped to die with dignity begs for reflection, time and space to create connections that are remembered by survivors long after a patient’s death.”
Advocates of physician-assisted suicide and Catholic health care leaders opposed to the practice seem to share a common goal: reducing unnecessary suffering for those nearing the end of life. Both sides seem to agree that pain is more manageable now than it has been in the past. But other forms of suffering involve complex issues about what constitutes a good life, a fear of alienation and isolation and anxiety that the family will feel burdened if called upon to offer care. To these questions there are no easy answers.
One side argues that patients who have these fears should be able to avoid the suffering by ending their lives early. But given the church’s rich history of finding meaning in suffering, especially in death, end-of-life care infused with Catholic values may be uniquely situated to provide an insight into the fears and concerns that accompany dying. Catholic ethicists, social workers, doctors and chaplains might nudge society to see in the fears of the dying an opportunity to address the root causes of those fears: a sense of ostracization and alienation that can be addressed with stronger communities and support networks. That pathway is not quick or tidy, but if done well, it could offer patients of all faiths, or none at all, a chance to die "a good death."