"He just thinks he's a doctor"
December 26, 2009 -- Today the New York Times published a very long article by Anemona Hartocollis about sedation of dying patients, as part of the paper's "Months to Live" series. The piece had lots of important information about the difficult choices and practices involved in end-of-life care. Unfortunately, although nurses provide the vast majority of the professional health care that dying patients receive and have great expertise in that care, only one nurse is quoted in this 4,800-word piece. And although that nurse does get to briefly convey some knowledge and authority, she is not being consulted as an expert in palliative care; the reporter simply observed the nurse having interesting interactions with two patients' families. None of the other scattered references to nurses give any indication that they play a central, autonomous role in end-of-life care, nor that nurses have been at the forefront of efforts to provide dying patients with adequate pain relief and some control over their last days of life. Instead, the article is dominated by physicians, with 11 different physicians named or quoted, sometimes at length, and numerous statements about what "doctors" think or do presented as pretty much the only things worth discussing with regard to the ethical issues surrounding end-of-life care. We urge the Times and Ms. Hartocollis to re-examine their assumptions, and to try to give readers a more accurate picture of health care areas, like this one, in which nurses play critical roles.
The Times article is headlined "Hard Choice for a Comfortable Death: Sedation." It describes how health workers and families work out (or fail to work out) the medication that terminal patients will receive. At times they must grapple with the "double effect"--that the drugs that bring patients relief of pain and agitation might also hasten their deaths. (The article does not mention the research that shows that medicated patients do not necessarily die sooner than those who are unmedicated.) We hear about the ethical issues involved, the specific drugs that may be used and what they do, and the philosophical debate among physicians over whether the process is really a form of euthanasia.The focus of the discussion is care by various institutions in the New York metropolitan area, and the caregivers, patients, and terminal care guidelines discussed are linked to those institutions, though the reporter says that many physicians were reluctant to "allow" her to speak to patients or families.
We thought it might be instructive to offer a partly quantitative comparison of how nursing and medicine are treated in this piece, particularly since it is focused on an area in which nurses clearly play a central role. So we did a few word searches. In the text and photo captions, the root "nurs" appears a total of nine times, in the following seven non-consecutive passages:
Barbara Walsh, a nurse on the hospice unit at Franklin Hospital, and Dr. Edward Halbridge are part of a team that works with patients and their families to map out end-of-life care. [photo caption]
In half a dozen end-of-life consultations attended by a reporter over the last year, even the most forthright doctors and nurses did little more than hint at what the drugs could do.
They were joined by Dr. Halbridge; Barbara Walsh, a nurse managing the hospice team; and Lynne Kiesel, a medical social worker, who called the Oltziks' daughter, Barbara Ladin, in Florida, and put her on a speakerphone.
Her husband, Alix, who was 53, had trained as a nurse and had told her that if he was going to die of his colon cancer, he wanted to die at home, with his wife and their two teenage children.
Dr. Lyla Correoso, Bronx medical director of the Visiting Nurse Service of New York, and Dr. Shaiova spoke with doctors, nurses, administrators and social workers at Metropolitan Hospital about how to explain the process to families and colleagues, so no one would feel guilty or betrayed.
After she was moved to the hospice wing of Margaret Tietz Nursing and Rehabilitation Center in Jamaica, Queens, she received fentanyl, a synthetic opioid pain reliever, through an IV line that gave her the drug continuously, and allowed her or a nurse or doctor to push a pump for more when she had "breakthrough" pain.
In her last days, she lost the desire to eat or drink, though nurses continued offering food and water, Dr. Carrasco said.
Although it is telling that two of these references to "nursing" appear in the actual names of the institutions in question--these are "nursing" institutions because they are mainly about nursing care--the passing references to nursing above are consistent with a vision of end-of-life care in which nurses play no key role. Note also the suggestion that physicians would be involved in giving fentanyl by IV to a hospice patient; nurses, not physicians, dispense pain medication.
A couple small parts of the report actually do have quotes by Barbara Walsh, the only practicing nurse identified in the entire report. When the reporter describes a meeting with a terminal patient's family, deep in the article, we learn that Walsh is a "nurse managing the hospice team." Although the physician present at the meeting gets far more description and many more quotes in the article, quotes from Walsh are included in these passages:
"We have these meetings to talk about how you're doing, how he's doing, and to give you a chance to ask us questions," Ms. Walsh began, then turned to Dr. Halbridge, who signaled his profession with the stethoscope wrapped over his dark blazer like a shawl....
Ms. Walsh added consolingly, "He really looks like he's sleeping." She said, apologetically, that the hospice had tried to find a balance between controlling Mr. Oltzik's agitation and making him too sleepy. "We did go to this IV as kind of a last measure, because we know that people do get sleepy and may not be as responsive, and we know how hard that is for the family to see," she said.
Later, in a discussion of the care of another dying patient, we read this:
Ms. Walsh, the team manager, patiently gave Mrs. Calixte a lesson in how to take care of her husband, but doubted that he would be able to go home on Monday, and she was right.
These passages do at least show that Walsh plays a substantive role in care. It sounds like she had some input on the decision about what medication the first patient would get, her "manager" role implies some authority, and she displays psychosocial skill. She knows how to take care of patients, and she can accurately gauge their conditions, e.g., when they will likely die. Of course, Walsh is quoted here only because she happened to say something notable in interactions the reporter saw. The reporter did not seek Walsh out for her expertise, and there is no indication that the reporter would regard any nurse as an expert in terminal sedation or end-of-life care. But if Walsh is the one "managing" the hospice team, why is the physician Halbridge quoted far more often in the piece? The report itself later notes that "Mr. Oltzik died two days after the meeting between Dr. Halbridge and his family"--as if the only people at the meeting who counted were the physician and the family. We also liked the bit about a stethoscope signaling the physician's profession, as if nurses were any less likely to wear or use a stethoscope that way. But at least the reporter did choose to include some of the nurse's comments.
However, these passages are drops in the physician-centric bucket. Physicians utterly dominate the remainder of the piece: "Dr." appears 54 times, and "doctor" appears 33 times. In some cases, these references consist of statements about what "doctors" say or do about important end-of-life care issues, as if that's all that matters, even though nurses are at least as likely to be doing the tasks in question and to develop relevant expertise. For example, the piece says that physicians "perform" terminal sedation, when nurses are the ones who administer and monitor the effects of these often complex drug regimens, adjusting them according to patient conditions and decisions. But here, only what "palliative care doctors" think about the drugs seems to be worth discussing.
No less than 11 physicians are presented by name or quoted in the piece, sometimes at length. Perhaps listing them as they are identified in the article will give some sense of the ultimate weight this carries. They are Dr. Edward Halbridge, the Franklin Hospital hospice medical director; Dr. Lauren Shaiova, chief of pain medicine and palliative care at Metropolitan Hospital Center; Dr. Paul Rousseau, then a Veterans Affairs geriatrician in Phoenix; Dr. Russell Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center; Dr. Pauline Lesage, Beth Israel's hospice medical director; Dr. Lyla Correoso, Bronx medical director of the Visiting Nurse Service of New York; Dr. Jack Kevorkian; Erik Carrasco, a physician at a hospice agency; Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College; Dr. J. Andrew Billings, a Harvard professor and palliative care doctor at Massachusetts General Hospital; and Dr. Susan D. Block, a psychiatrist.
Virtually the entire piece gives the impression that only physicians play any significant role in deciding what medication is appropriate, and by implication in end-of-life care generally. Physicians do have a lot of power in prescribing medications. However, advanced practice nurses, who assume roles traditionally played by physicians, often work in this area and prescribe medications. The piece gives no indication of that, and no advanced practice nurse is mentioned or consulted. In any case, it is direct care nurses who provide virtually all end-of-life care, monitoring patient conditions (especially pain), initiating and adjusting various types of care such as medication and oxygen supply, and using their psychosocial skills to address critical issues with patients and family, helping them come to terms with the eventual outcome. Nurses have led the way in efforts to provide more humane end-of-life care, for instance in the movement to shift the focus from a "do not resuscitate" model, where patients choose that, to one to "allow a natural death." In fact, for many decades, nurses have often pushed for adequate pain relief for dying patients, in the face of indifference or resistance from some physicians. The article's omission of nursing expertise and experience matters not just because it undervalues nursing, but because the piece fails to consult the health professionals who actually know the most about dying--the nurses who spend far more time caring for terminal patients than anyone else.
Indeed, nurses have strong and informed views about dying because they see so much of it. Experienced palliative care nurses develop significant expertise no one else has. There is a big difference between checking in on a dying patient for a few minutes a day, and spending hours watching that patient struggle and suffer. And there is a difference between seeing a loved one go through that during one intense period, and watching patients and families go through it countless times during a professional nursing career. Barbara Walsh, the one nurse who does appear in this piece, did not know when her patient was likely to die because she made a lucky guess; she knew because of nursing skill. Perhaps because the piece relies so heavily on physician comment, there is a kind of abstract, intellectualized quality to some of the discussion, with its focus on things like Thomas Aquinas's "double effect," theoretical ethical distinctions, and semantic considerations.
Of course, there are nurse experts fully capable of discussing the philosophical and technical drug issues the Times piece pursues. For example, Patricia Berry, PhD, APRN, FAAN, an associate professor at the University of Utah College of Nursing, is widely recognized for her work in end-of-life care and pain symptom management. Advanced practice nurse Constance Dahlin, who teaches at Massachusetts General Hospital and Harvard Medical School, has worked to develop sedation policy and a protocol for ventilator and technology withdrawal. And Kathleen Geagan Ryan, a senior hospice nurse and ordained interfaith minister, provided expert input for Cynthia McCormick's very good Cape Cod Times story in April 2009 about spiritual discussions with patients in the final days of life.
Tellingly, while the Times piece informs us of what the American Medical Association and the American Academy of Hospice and Palliative Medicine (both physician groups) think of palliative sedation, it says nothing about what the American Nurses Association or the Hospice and Palliative Nurses Association thinks. After all, what do hospice nurses really have to worry about on the big issues, professionally speaking, except to ask the physicians what to do?
Of course, the Times article is too sophisticated to portray physicians as omniscient gods. Indeed, the piece emphasizes Dr. Halbridge's humility regarding the limits of what medicine can do for patients and the need for physicians to accept that sometimes terminal sedation is the best care:
[Halbridge] then told a self-deprecating joke about a doctor who gets to the gates of heaven and demands to jump to the head of the line, only to be turned back by St. Peter. But St. Peter opens the gates to someone else carrying a doctor's bag. "That's God," St. Peter explains. "He just thinks he's a doctor."
That familiar joke says a lot about how physicians see themselves and how society sees them. But the reminder that physicians are not God, and that the good ones realize that, only makes the underlying physician-centric messages more persuasive, as often occurs on television hospital dramas. No reader could come away from this article with the impression that nurses have any real expertise in end-of-life care, or that they play any role in it except to help physicians. So the report still supports the notion that physicians, though not technically divine, are the masters of all health care, and that no one else need be consulted in a story about any health care subject.
Responsible news articles on end-of-life care should reflect the reality of that care, rather than reinforcing physician-centric assumptions that make it harder for nurses and other health workers to do their jobs. We hope the Times will try to do better in the future.
See the article:
Please email Anemona Hartocollis and ask her to improve her depiction of nurses in future pieces. Click here to see Ms. Hartoicollis's page, then click on the "Send an E-Mail to Anemona Hartocollis" just below her name. And please send us copy of your letter at firstname.lastname@example.org. Thank you!
See the article "Months to Live: Hard Choice for a Comfortable Death: Sedation" by Anemona Hartocollis posted on the New York Times site on December 26, 2009.