Confronting Patients and Physician Colleagues in Palliative Care
Juan Iregui MD, MA, and Gordon J Hilsman
In the 2011 Joe Carnahan film The Grey, wolf hunter John Ottway (Liam Neeson) is aboard a plane with an all-male collection of passengers, mostly criminals, in northern Alaska when it crashes in a blizzard. He is immediately in the presence of a man whose guts have been torn out in the impact, is bleeding out and still talking.
The man screams, terrified: “What’s happening to me? What’s happening!”
Ottway, in a surprisingly calm tone says simply, “Well, you’re dying’, that’s what’s happening to ya.”
The man, in his same frantic tone, asks, “What do I do, what do I do!”
“Just let it slide over you,” says Ottman. One person helping another one die.
A classic scene over the centuries, one that has precipitated much of the theology by which we calm ourselves in the face of life’s greatest mystery – what’s next after life is over? The twentieth century brought out two developments that improved that impulse to help one another let go of this life and approach the next world, if there is one. Hospice and palliative care have brought new human help to people in their last days and months than anything else in centuries. Approaching death rips away much of our trivial interests and petty concerns, almost forcing focus on “the hour of our death .”
The rapidly developing inter-disciplinary service of palliative care is, in itself, spiritual care. Its nature as motivated by meeting, informing, partnering with and bolstering the human spirits of very sick people makes it a unique area of spiritual care. Born in medicine and often independent of religion, it takes a path more towards humanism, albeit honoring religion for its human value rather than excluding it. Like Alcoholics Anonymous, it emerged to fill a long-standing void in the ability of religion, medicine, government, and the behavioral sciences to adequately care for the human spirits of people in specifically difficult life situations. It developed in the last quarter of the 20th century to use interdisciplinary collaboration in new ways to care for people in the upheaval of facing very serious illness and dying.
Palliative care teams are generally organized around a medical practitioner, mostly physicians and nurse practitioners, as those who currently carry the professional and legal responsibilities of hospital admissions, official diagnosis, ordering the course of treatment, and writing notes that record the medical care. Juan Iregui is an internist physician and bioethicist with 20 years of experience leading palliative care teams in New York, Florida and Washington State and has spoken nationally on the intricacies of patient conversations in that service. He and his colleagues have developed highly successful palliative care frameworks that guide their care of patients and their relationships with attending and referring physicians.
Two case examples below illustrate common conversations they make in an ordinary workday, confronting patients about their unrealistic outcome expectations, and the physicians in charge of their care about the over-optimistic attitudes they often imply to their patients as they decline. Iregui works quietly and always empathetically to gradually improve the authenticity, interpersonal courage, and professional intimacy of those end-of-life conversations. He invites both sides of the patient-physician dialogue to simplify and clarify their interaction for better dying experiences on the one hand, and improved physician satisfaction on the other.
Confronting Patients and Families
A perennial project of most palliative care cases is that of managing expectations. As people get sicker with such conditions as heart failure or cancer, they decline. Maybe not rapidly or alarmingly but relentlessly overall. As they get worse their realistic chances of recovery or even of improvement typically grow dim. But for many, their positive expectations do not wane as fast as their health. They eventually arrive at a personal place in which their expectations remain unrealistically bright. At some point in their decline, they may benefit from communication that challenges those cheery or Spartan expectations that once served them well, but now set them up for dying without personal and interpersonal preparations. About 75% want to be told when it becomes clear to medical practitioners around them that they are not going to be returned to enjoyable functioning. For various reasons they often are even offered access to this important information.
Palliative care teams seek to get and keep a grasp on the inner expectations of patients as information about their illness gradually and sporadically becomes available. It is a team shared responsibility to elicit the thinking and attitudes of patients by candid questions, disclosing and describing new technical images and data, and careful listening. Iregui uses the phrase “we make the invisible, visible” in referring to this consultative relationship.
There is an art to this project of managing the changing expectations of patients. When there is serious bad news to be communicated, he uses a practical three step process he fashioned from reading clinicians’ published wisdom (2) and his own considerable experience, to provide the information in the best form he can that is realistic – neither brutal honesty, nor cheery optimism.
That approach starts with an early question to all palliative care patients about how they want to receive new information as it is generated in the development of the patient’s illness so he and his team can tailor the conveying of the new information to the patient’s preferences. Dr. Iregui asks every patient quite clearly and directly, some initial question like, “As more information becomes available about your condition, how do you want us to share it with you ? From one point of view he is “cleaning up” previous physicians’ paucity of openness, thoroughness, communication skill and moral courage to tell the bad news in a way the patient and family are most likely to hear it. In stage 4 cancer, for example, 40% of patients still believe that surgery could cure them. Iregui and his team are relentlessly seeking to get a realistic view to patients and keep them abreast of changes all along the way of their treatment.
When the first conclusive indication of irreversible decline emerges from image and lab data, that the patient has reached a medical situation from which they will most certainly not recover to any enjoyable life, it is time for the pivotal conversation with them. A process for confronting the patient about their now overly-positive expectations has been developed by clinician-writers at Harvard and other places of innovation . Dr. Iregui has fashioned his own basic framework of how to approach that conversation with all of its possible variations.
His first step is already complete. Soon after initially meeting the patient, usually weeks or months earlier, he asks something like, “If the time comes that I will have to tell you seriously difficult new information about your condition, how would you like me to do that?” About 25% of patients do not want their physician to tell them the full truth about their condition, preferring him to tell a close relative, or just write it in the chart they will never ask to see.
He also reminds himself to detach from outcomes, a skill he continues to develop . This allows him to direct his efforts to the process of disclosure and decision making, trusting that a well-informed patient will make the right decision from his perspective even though at times he may disagree with their decision.. Dying is as much a part of life as being born. Avoiding it until one can’t anymore, and then embracing it with integrity may be the best sign of maturity and a life well lived. He is doing his part in facilitating that process.
In preparing himself he also re-familiarizes his memories of the course of the patient’s illness, their personality, and what he knows of their values, hopes and dreams for the future, if any. He is getting clear in his own mind precisely what the patient’s condition is. Iregui has a life commitment to finding an economy of accurate words with which to confront them, combining the stark truth with a kind attitude and voice tone that cannot be faked. It needs to be authentic, so he generates here-and-now compassion inside himself before the moments of encounter.
Secondly, he tells the patient the new information with directness and calm precision, putting the most salient point upfront, not obfuscated by excessive medical jargon of good intentioned cheery tones. Iregui and other physicians have adopted from journalism the phrase “Don’t bury the headline!”, by surrounding the serious news the patient needs to her with positive, irrelevant facts, medical jargon or slender possibilities that often leave the patient confused or abandoned with “nobody tells me anything” attitudes. He is hyper-aware of how this patient’s previous medical practitioners may have cushioned the truth at other stages of the illness and believes it is an ethical responsibility to convey accurate information in whatever way this person can hear it best. That is an aspect of the art of medicine that needs intuition and concentration and is inherently fraught with ambiguity. But effort and experience teach those open to continually learning.
Third, there is the patient’s initial response to the “serious news.” After telling the patient in the way they have said they wanted new information to be made available to them, he waits in the presence of the patient, observing their response or reaction, resisting the temptation to use more words to soften the impact and distract the patient from their own authentic inner processes. That interpersonal waiting may be the most important five to ten seconds of palliative care practice. The patient almost invariably responds to that brief but profound silence with directness about some form of their values, what is important to them at this pivotal moment in their lives. The doctor’s response depends on the patient’s reaction – whether emotional or cognitive.
If the patient’s reaction is cognitive, such as a medical question, request for description of the manner of dying they will face, or seeking clarification of the new disclosure, the doctor’s response is cognitive too, answering the question, providing further information, or guessing at the likely prognosis of pain or the likely experience of dying from the patient’s specific illness. A supportive comment about commitment to future care, palliation of pain, or offers of religious/spiritual support may follow.
More often the patient’s first response to the serious news is some form of emotion however. Then Iregui is ready with an empathetic response to the fear, anger, sadness, regret, or hurt, whichever comes across from the patient most clearly. Conveyed empathy still stands as the most human and caring attitude in spiritual care. It may be something spoken calmly like, “This is really hard”, for example; or “I can see this is very hard to hear for you”; or “I can see that this is really difficult for you.” Some reassurance that there will be compassionate help along the way of the patient’s future may follow in the next few minutes, but not so quickly that it is dismissive of the profundity of the moment. An offer of referral to spiritual leaders or social work connections is not uncommon.
The important thing is the sustained presence of a savvy medical practitioner willing to respond freshly to the patient’s lead. (“Sit” and “stay” would be the appropriate dog commands! Or the Jewish proverb: Don’t just do something, sit there). After the jolt of the bad news, patients benefit from some deep impression of the non-verbal care of one medically experienced person who understands and will give the time and presence it takes to incorporate the bad news into their life. That experience can be a most pivotal care experience of a lifetime. Canned speeches or pedantic teaching will likely be felt as abandonment. Dr. Iregui says, “You must always speak the truth but never separated from compassion.”
Confronting Physicians
The grounding ethical and moral principle for physicians is faithfulness to the massive trust placed in them by a society that helped them gain that position of trust through public education. That trust injects a moral imperative on medical practitioners to function only in the best interest of the people they serve. Beyond being a place of honor, an esteemed social role, and a lucrative profession, medicine is a binding responsibility to make all other influences and pressures secondary to the highest good of every single patient they serve. That includes a fair amount of self-awareness in physicians as they joust with their own partially conscious motives, proclivities, and avoidances of unsavory aspects inherent in that role.
Palliative care physicians have a unique perspective from which to assess the communication of attending physicians with their patients. When they take a case at the request of a patient, family member, staff member or a physician, they can peruse the entire history of treatment in the medical record. It sometimes becomes apparent that a given physician has misled a patient and/or family about the seriousness of the medical issue, its prognosis, and the reasonable expectations of the patient and family member regarding any hope of quality recovery, i.e., there will be no returning to a previous level of health.
Dr. Iregui says he has only twice in his substantial career found a physician who exhibited intentional or seriously negligent behavior that needed intervention from regulatory agencies. But very frequently he has needed to confront a physician about ordinary negligence or unsatisfactory practice, medically or ethically. Here is one of them he calls Dr. M.
Patient is a 47 y/o woman with Stage IV stomach cancer who is very motivated to receive any available treatments, in her words: “I want something done”. Patient was initially scheduled to receive outpatient chemotherapy but had a blood clot that precipitated her hospitalization. Because of weight loss the oncologist documented on the chart that they had spoken to patient about hospice and that more treatments were not available.
When Palliative Medicine spoke to the patient, patient stated that oncologist told her that “if you get stronger, perhaps we can look for other treatments”.
Though common, that was a violation of professional responsibility. The oncologist had shared with other clinicians that he did not think the patient could get stronger and instead of being truthful he gave her false hope. Clinicians are known to do this because they feel terrible telling patients the truth since they are ill equipped to deal with emotions and because they don’t want to “take away hope.”
Iregui takes it upon himself to confront the oncologist about what is an apparent habit or pattern of communication that steals from dying people the opportunity to finish personal and interpersonal business, express a quality goodbye to people they really love, apologize for some behavior they regret, verbally forgive those people they once resented, and attend to financial and other material matters that tie up loose ends of a lifetime. His meeting with the oncologist is rather simple and he makes it easy. He never confronts without first finding common ground with the other person and without reminding himself to express empathy first. He calls it, “attributing positive intent”, a phrase invented by management development experts meaning, assuming that a person is doing their best with the best of intentions in an uniquely complex situation in which they find themselves.
Iregui: “Hi Dr. M, I spoke with the patient and what she got from your conversation with her is that she needs to get stronger so she can have more chemotherapy. Is that what we should do, to encourage her to go to rehabilitation instead of considering hospice as you wrote in your note?
Attending oncologist: “Well theoretically that is possible, but I don’t think it is going to happen for her, she is too weak.”
Iregui: Did you share with her that you are worried that this is as strong as she is going to get?
Oncologist: “I didn’t want to take away her hope.”
Iregui: You know, false hope can be more devastating for patients and families because they don’t get the opportunity to plan ahead and end up missing opportunities to have closure with relatives and to be surrounded by loved ones instead of going to a facility ‘trying to get stronger’.
Oncologist: “What would be a better way to communicate with her.”
Iregui: “Would you want to try saying: ‘My hope is that you do well and get stronger. I am worried though that this is as strong as you are going to get and I feel that getting hospice to help you get home to be with your family might be the best option’.”
He went back and talked to the patient. I wasn’t present, but I heard later during the day that the patient had chosen hospice.
The important point here is not the patient choosing hospice but proper disclosure from the physician. Once the physician fulfills his professional responsibility of being truthful and can let go of outcome. Whether or not the patient chooses hospice is irrelevant because if the patient declines hospice, they are doing it after having access to the information that a prudent person would need to make an informed decision.”
The ingrained habit of many physicians even today is that, while in possession of clear diagnostic data indicating that a patient will never again return to any acceptable level of enjoyable functioning, is to fill a few sentences with phrases and platitudes like “There are still things we can try…”, “You’re really a trooper in this war against your cancer…”, and, in response to a patient’s pensive question, “Don’t you worry about that. Let me worry about that.”
“That common habit is unethical” says Iregui. And he works daily to stem that tide one colleague at a time.