How Close Is Too Close? Treating Loved Ones With Cancer

Liam Davenport

Disclosures

September 12, 2018

Anyone even vaguely connected with the medical professions has experienced a friend or relative asking them for advice on everything from the common cold to what a lump they've just found could be.

But what happens if you're an oncologist and you're faced with the prospect of treating a loved one or close friend with a potentially life-threatening cancer?

For Virginia Kaklamani, MD, leader of the Breast Cancer Program at the University of Texas Health Science Center, San Antonio, , one of the biggest issues is losing the objective distance necessary in the doctor-patient relationship.

"A lot of times, you have to decide when to not treat, and in those situations I think that's where the danger is of losing your objectivity with loved ones," she told Medscape.

"You need somebody to tell you, 'This is not working anymore; we need to stop.' This is a very difficult decision that's [often] hard to make with your own family members."

For many, it boils down to a question of "how close is too close," especially when it comes to family members and friends. But the same can apply to colleagues, if they are well known to you, and physicians may become close to their patients during the course of treatment.

There is, nevertheless, a gray area around what constitutes 'family' or a 'loved one.'

And what about when oncologists get sick? How does it feel when the tables are turned and they become the patient being treated for a malignancy? Are there ways to navigate this delicate situation that ease the journey for both physician and patient?

A Question of Proximity

Given all of this, it is reasonable to ask whether physicians should be treating friends and family at all.

Kaklamani believes that they should not.

She said, "You're recommended to pass on those individuals to your colleagues, so you're not supposed to be treating your loved ones."

Bruce E. Johnson, MD, a professor of medicine at Harvard Medical School and the Dana-Farber Cancer Institute in Boston, Massachusetts, and past-president of the American Society of Clinical Oncology (ASCO), is of the same opinion, saying , "Even with my own family, I try not to get involved in the specific recommendations."

"I don't think that it's a good idea to treat family members, and even close friends," he added in an interview with Medscape.

Kaklamani noted, however, that "it's not a hard rule, but that's what everybody expects you to do."

Anna C. Beck, MD, director of Supportive Oncology and Survivorship at the Huntsman Cancer Institute and an associate professor of medical oncology at the University of Utah School of Medicine, Salt Lake City, agreed.

"There are no hard and fast rules. It's always just a consensus that you shouldn't be treating any of your immediately family members, and I would assume that that means any first-degree family members," she said.

"However, I don't think there's any way of enforcing that concept, and I have come across physicians who have treated their spouses, their parents, and to a certain extent, their children.

"I think the rest of us look at it and we're uncomfortable with it, but nobody would go so far as to say that you shouldn't be doing that."

There is, nevertheless, a gray area around what constitutes "family" or a "loved one."

During a session[1] at the ASCO 2018 Annual Meeting on treating colleagues and loved ones, Julia L. Close, MD, from the University of Florida, Gainesville, asked, "What is too close before you'd consider someone to be your patient?

"I think we all know that immediate family members are probably too close," she said, before asking whether cousins, aunts, second cousins or even third cousins would be too close.

"Is there a point [where] the blood doesn't matter, because the patient becomes so far removed from you and it really becomes about the relationship and not whether or not they're related?"

However, for Rebecca Pentz, PhD, a professor of research ethics in the Department of Hematology & Medical Oncology at Emory University School of Medicine in Atlanta, Georgia, who also spoke at the session, the definition is "pretty clear."

She pointed out that the "American Medical Association medical code of ethics says you should not treat your family members or yourself.

"That's pretty straightforward; not any of this is a judgment call."

Nevertheless, even she conceded that there are exceptions, such as minor care or in emergency situations, when no other physician is present.[2]

Pentz stressed that this does not include the prescription of controlled substances, and she underlined that the main ethical concern when treating close personal friends or family is the potential for performing healthcare in an informal setting with no documentation.[2]

The Risks of Treating Loved Ones

The potential fallout from treating family or close personal friends does not end with practical concerns over paperwork, however.

Jamie Jacobs, PhD, a clinical psychologist at Massachusetts General Hospital, Boston, pointed out that the emotional nature of the relationship means there is "the potential for undue influence and biases that affect the doctor's decision-making as well as the patient's decisions about their disease and treatment."

This can not only cloud the judgement of the treatment provider but also make it "difficult for a person who is being cared for to perhaps be as open about their symptoms as they might be with someone more distal."

Jacobs said, "Some patients might be more likely to share details with a family member or friend, but others may be less likely to share symptoms that they perceive as embarrassing," adding that, for the physician, "sometimes there might be a tendency or temptation to step out of your area of expertise with the intention of helping a friend or loved one the best that you can.

"It's with the best of intentions, but they might end up practicing in an area that they're not as confident in in order to try to be most useful and supportive."

Another danger is that a physician might be tempted into giving information that a patient is not prepared for.

Jacobs said that she and her colleagues are conducting a study of patients with advanced cancer and their caregivers, which has provided some insight into this area.

"We've been noticing that sometimes patients and caregivers are calling upon friends of theirs or family members who are experts in the field, because they want more information beyond what their doctor has shared," she said. "For instance, they want more clarity about the future, asking, 'What is my prognosis? How long do I (or my loved one) really have left to live?'"

Caregivers in the study, however, told investigators that once patients did get more direct answers from physician or nurse friends, they wished they had not asked, because the relationship dynamic shifted to feeling more clinical rather than emotional.

"Sometimes when we get asked these delicate questions more directly by friends and family, we might be more likely to give straightforward answers that family and friends might not be ready to hear," Jacobs said.

"A family or a friend may come to us and say, 'Okay, give me the real deal. My doctor gave me a range of time that I may live for and I really want to know more specifically,'" she continued. "So you're a close friend or colleague and you really want to help them...You certainly still can't make a determination about how long they will live, but you might give them more information than they're really ready for, even though they're telling you they are."

She continued, "Often patients may feel wholeheartedly that they want to know but then end up wishing they didn't ask. You don't want to be the one to have given someone information that they can't un-know."

Kaklamani said that, in those situations, "you lose your objectivity and you can't see it, especially in treating cancer."

This is particularly true when it comes to end-of-life decisions.

Jacobs agreed, saying, "It's not just potentially harmful for the patient; it's potentially damaging for the relationship and it's potentially detrimental for the oncologist or the nurse giving the information.

"It has to be very difficult to see someone you love struggling in that way and not be able to help them, or if there are no further treatment options available, to be the person to deliver that type of news to someone," she said.

Sometimes It's Unavoidable

There are situations, unfortunately, when oncologists are drawn into treating a loved one against their better wishes.

Kaklamani faced that situation when her father-in-law was diagnosed with pancreatic cancer. Although he was treated by one of her colleagues, he was admitted to the hospital where she works with issues related to his disease.

"I happened to be the person on service, so I took care of him for a few days. At the time, [my colleague] asked me whether I wanted to switch to have somebody else take care of him, but it seemed to be a pretty simple decision that needed to be made."

Kaklamani said, "It was a little uncomfortable in the sense that he considered me more of his son's wife than a physician, but it really ended up being fine.

"I think the point is that it was only for a short period of time. It wasn't something that I was going to be doing for a long period of time, because then it would definitely have been a major issue," she said. "You kind of lose your perspective a lot of times, and that's where you need to listen to somebody who's a lot more objective than you can be in those situations."

Johnson, who specializes in treating lung cancer, also became involved in a close family friend's care as a last resort.

Was the line crossed in that situation?

One of his neighbors had lesions in her lungs but was finding it difficult to get a proper evaluation. Johnson pointed out that this is not an unusual occurrence, as nonspecialists can easily underappreciate their potential significance.

"So I took it upon myself to bring her in and take care of the evaluation myself. The reason why I ended up doing it is because, in that particular case, it was one of those things that was falling between the cracks and it was taking a long time," he said. "I thought it was pretty important to get it done and get it done quickly, so in that case I took care of it myself. In that situation I would normally refer to one of my colleagues."

While not having treated a loved one herself, Beck witnessed an example outside of oncology, when a colleague of hers managed his wife's severe asthma—with tragic consequences.

"I recall vividly that she had a severe asthma attack one day," Beck explained. "She tried to reach him; he raced home but not in time, and she passed away...It was particularly awkward because they were in the throes of a divorce, so everybody had felt very uncomfortable with the fact that he was managing this asthma in his soon-to-become ex-wife."

Beck added, "It's a good example of why we should not be taking care of our first-degree relatives. Was the line crossed in that situation? It's best left to interpretation, but it sure puts you in a position where you look awfully sketchy."

Such situations can be managed successfully, however.

It's hard to remain objective.

Kaklamani gave the example of a colleague whose child was diagnosed with cancer.

"She was extremely careful in not being involved herself in the treatment of her loved one, and so actually that made things much easier than they could have been if she had decided to run the show herself," she said. "But this is somebody who was extremely cognizant of the difficulties of treating loved ones.

"The people I've worked with, we know better than to put ourselves in that sort of situation. We understand the issues that come with knowing a little too much and thinking that we can do better," she said.

How Can Oncologists Best Help Loved Ones?

So, what role is best for oncologists to take when it comes to a family member or close friend? Beck thinks the best approach is to be supportive.

"If my family member feels like they are getting care that they're not happy about or doesn't understand the recommendations, that's where I view my role as helping with clarification, but I wouldn't take it much beyond that," she said.

Jacobs added that physicians can "attend an appointment with that friend or family member so that that person has an additional set of ears, and can offer their interpretation to help the patient reach a clearer understanding of what their doctor is telling them.

"Or they can discuss the results of their test with them, and that person can then serve in a more validating and reassuring role but not be the one to provide direct recommendations or decision-making, or make determinations about treatments," she added.

When a Patient Becomes a Friend

The physician-patient relationship can also become more difficult when the doctor or healthcare worker becomes emotionally close to a patient during the course of treatment.

Speaking at the ASCO 2018 session, Ranjana Srivastava, MD, from Monash Medical Centre in Melbourne, Australia, said, "Certainly I'm sure that this experience is not true just to me, but also to you, that we look after patients sometimes for long periods of time and we become really emotionally attached to them.

"And something that I have really grappled with over my career is how to debrief from that, and how to go on and to maintain my equanimity, and keep looking after patients well," she said.

Jacobs said that nurses working on intensive care and other inpatient units can become close to patients and their families over the days, weeks, and months of an admission, to the point where they have developed friendships.

"It can become difficult to see the families face challenges and complications in their treatment after you've been working with them for so long," she noted, adding, "We're more likely to do things for people who we know, love, and trust, and vice versa, and so it's hard to remain objective."

What About Treating a Colleague?

For an oncologist treating a colleague with cancer, the situation is, in theory, much less fraught. Indeed, for Johnson, it's "pretty straightforward."

At ASCO 2018, University of Florida's Close was less sure, however. Again, the question of proximity came up, with colleagues who are close friends falling into the same gray area as that of loved ones.

She said that, when wondering about how close is too close, "Does the diagnosis matter? If it's someone who is curable, is that different?"

Pentz said that, in that case, "the friend rules apply," noting that there may be state laws that govern the treatment of colleagues.

Physicians should also ask themselves whether they can "provide objective professional care," and whether there "might be a power imbalance" between the doctor and patient.[3]

Pentz emphasized that patient confidentiality needs to be maintained, and that colleagues should be treated in the office rather than in another location that could compromise care.

Moreover, it should be clarified that the colleague is indeed the oncologist's patient, and that normal documentation standards be maintained.[3]

Pentz also believes that, while it is easy to say that colleagues should not have special privileges, such as bypassing office staff,[4] "that isn't going to happen in real life.

"You do have a relationship with your colleague, even though it's not a close personal relationship, and relationships spawn duties and special privileges as well," she said. "So I think as long as you do not disadvantage your other patients, you can do minor things, like rearranging schedules so that you can see your colleague."

Johnson perceives it as one of his obligations to see a colleague or, for example, the family member of a hospital trustee, as soon as possible.

"The term I would use is 'off-template,'" he explained, "so that if it's a family member of one of my colleagues, I'll see them on a day that I'm not normally in the clinic and try to honor it as quickly as possible, which would potentially include adding them on."

Unsurprisingly, it is not uncommon for oncologists to end up treating colleagues, with Kaklamani saying that she is treating a coworker currently.

"That's worked okay, thankfully," she said. "I think she knows enough to ask questions that she needs to ask, but she also knows to let a lot of the decisions go to the specialists."

For Johnson, being a lung cancer specialist, the situation crops up less often, but he does end up treating the family members of physicians.

"I saw somebody yesterday where both the husband and the wife are physicians," he said. "The husband is a physician here at my hospital, and it's a little more uncomfortable," he said. "There's both a personal relationship as well as a professional relationship, and you have a tendency to try to be somewhat friendly but also to make sure that the patient is comfortable with the relationship, and that's something that I'm pretty cognizant of."

When Treating a Colleague Goes Wrong

These situations do not always go so well, unfortunately.

Beck recalled a malpractice case in which a physician went to her colleagues for medical advice, which was given "in a very superficial way." The physician went on to be diagnosed with cancer and she sued her colleagues.

"Their defense was: You're a physician, you should have known to do more, or should have known that that there was more required," Beck said. "I thought, well, that really captures the whole conflict if you ask your colleague to be your doctor, or you ask him to be your doctor, because you know that you can manipulate them or that they're going to do what you want."

The better outcome, she noted, would be that the physician find "somebody who you trust is going to recommend the right thing to do, even if it's not the choice that you were hoping for."

The potential issues with physicians treating their colleagues do not end there.

Although there have been few formalized studies of this delicate area, at ASCO 2018, Stephanie L. Graff, MD, from the Sarah Cannon Cancer Institutes at HCA Midwest Health in Kansas City, Missouri, pointed out that the available literature does reveal some barriers to the relationship between the physician and a patient who is also a physician.

She said that "the first is de-doctoring the doctor, where we really strip physician patients of their identity as physicians," adding, "The next is maintaining boundaries...and then avoiding assumptions.

"We tend to assume that our physician patients know things or act in certain ways that maybe they don't," she said. "And managing care of physician patients in the context of their high-level access to healthcare information is a particular challenge, as is utilizing our own emotional intelligence while allowing for our physician-patients to still express vulnerability."

Graff pointed to research that revealed differing approaches to healthcare for physician-patients.[5]

The first was "insecure care," which is characterized by physician-patients feeling intimidated or worrying about their level of ignorance, while the second was "usual care," in which the physician is treated like any other patient.

The third was "responsive care," which took into account the patient's identity "and our own tendency to overassume", while the fourth was "secure and prioritized care," "which is what I would call the VIP model," she said.

Graff said, "I feel that responsive care is the balance that we should all be striving toward...for all of our patients, not just our physician-patients."

She believes that questions of privacy need to be addressed upfront, alongside how physical exams will be handled and the role of psychological care. In addition, physician-patients should be encouraged to interact with other members of the care team and to limit after-hours care.[6]

Graff underlined that this need not be difficult to achieve.

"When we're caring for our physician-patients, I don't believe that we need to feel like we're in uncharted waters," she said. "We can acknowledge their professional capacity while identifying their limitations. We can discuss the framework for what our relationship is going to look like early and often, including enforcing that critical care of physical exams and office procedures."

How Does It Feel to Be on the Other Side?

While it is common for oncologists to treat their physician colleagues, it is just as common for oncologists themselves to become the patients.

Johnson had that experience when he was diagnosed with prostate cancer 6 years ago and "I had to pick somebody to do my operation."

He said that different people have different approaches to this potentially difficult choice. "Some people who are in the business obsess and want to go to see the very best person, get on a plane, fly around, and see who can do it," he said. "One of the great joys of working at the Harvard-affiliated hospitals is that we're surrounded by very carefully vetted folks, so I ended up picking somebody who was recommended by one of the medical oncologists and a person who had been trained in robotic surgery.

Physician-patients can easily feel exposed and helpless.

"The other part that I faced personally that was interesting was, in our hospital, they have kind of a VIP floor, where it's paneled and they have a chef and all of this other business," he continued. "Then they have the regular floor. Postoperatively, I went to the regular floor and shared a room because I wanted the specialty post-op nursing."

Beck has also gone through the experience of picking out which colleagues to be treated by, as she is a breast cancer survivor.

"I was working as an oncologist in private practice at the time, so I had eight oncology partners, and as one of the partners in the practice, I was also an employer of all of the oncology nurses," she explained. "I was in the position where I wanted to select one of my partners as my oncologist, and then the nurses who normally take orders from me now had to start an IV on me. So you can see how there's a layer of awkwardness that happens when physicians have to share responsibility like that."

Beck continued, "I selected an oncologist who I was confident would stay the course and do the right thing for me, and not necessarily do what I wanted him to do. I didn't want somebody who was just going to be like, 'Okay, what do you want to do? Let's do it your way.'" She added, "I wanted somebody who was going to say, 'I think this is the best way to treat your cancer and these are the reasons why I want you do it this way.'"

All of this means that the physician-patient's desired role relative to the treating physician shifts constantly.

Beck said, "You flip back and forth."

"You want to be a patient, but you also want to remind the physician that you speak their language, that you're part of their tribe, and please take extra care with me," she said. "It's a fancy dance that the two of you have to entertain."

Getting Involved in Decision-Making

In terms of choosing the most appropriate treatment, Johnson was fortunate that his case was relatively straightforward.

"There was very little decision-making to be done because, being familiar with the field, I knew from my laboratory characteristics and the histology that it needed local treatment and I was never in an information-seeking spot," he said, adding, "I knew that I wanted to have a surgical resection, and I was also familiar with the treatment options."

This was partly because his father had been treated for prostate cancer 20 years previously, and his experience with being irradiated had left him with complications years later.

"I didn't want to go through that, so I didn't actually need very much decision-making," Johnson said.

Being knowledgeable about your condition and its management can work both ways, however.

A consultant physician at a large teaching hospital in the United Kingdom, who wished to remain anonymous, told Medscape that when she was diagnosed with an aggressive form of lymphoma, she "found it hugely advantageous to understand what was going on."

"[You're not] frightened by a lack of knowledge or understanding. At the same time, the other side of the coin is that you probably know too much, and therefore you know the potential problems," she said.

Many of the things that I thought patients wanted to know were not even close to what the patient actually wanted to know about.

She added that her oncologists were "very frank" with her, "probably more frank, in a way," than they would be with a typical patient.

As with Johnson, there were few treatment options, and so the decision was relatively clear-cut.

"There were no options, really," she said. "That was what we were going to do. But when it came to the possibility of a stem cell transplant, they let me know that there was a dilemma over which way to go, and I suppose I did feel involved in the decision-making."

However, this sometimes slipped into the realm of too much information.

"I don't know if it was because I am a doctor but, in my circumstance, they were thinking way ahead and talking to me about transplants even before I'd had the treatment," she added. "I found that disturbing because I hadn't even got through the treatment."

A Loss of Privacy

Another issue is privacy, which can feel much more difficult to maintain when you are being treated in the institution where you work.

"At the time, when I was getting treated, I wasn't crazy about having it widely known," said Johnson, "and I never spoke about it publicly until a few months ago."

He explained that the clinic was in a different part of the hospital "and I almost never ran into people that I knew, but I did not want it widely known."

Despite strict guidelines—and, in the United States, the need for electronic records to be Health Insurance Portability and Accountability Act (HIPAA)-compliant—there is also always the fear that anyone can look up your records.

In addition, tissue samples that include your name will be processed in the hospital pathology department.

Despite that, the UK physician said that "you get support from colleagues because nobody wants to have something seriously wrong with them, so people understand.

"At the same time, there's a loss of privacy. Although I wore a wig, some people would have worked it out. Some people knew, some people never knew, I think, but there's a certain number who did know and said nothing," she said. "But that's life; that's not just being a doctor."

The Need to Be a 'Good Patient'

Alongside the loss of privacy is another, perhaps unexpected, consequence of being a physician-patient at your own hospital.

The UK physician explained, "It's very difficult to complain when things are not being done correctly because you don't feel as if you can. Some of the things that happened along the way, I'd have loved to have spoken about but I didn't say anything because you somehow feel you can't."

She added, "I must admit, personally—and I think other people feel the same—sometimes you feel under pressure to be a 'good patient' because you're a doctor. You don't want to be seen to be making a fuss."

Part of that is because "you [don't] want to upset people, because you know they're working hard, but there were problems that I've not discussed directly with the people who treated me because they're my colleagues."

The result is that physician-patients can easily feel exposed and helpless.

"It's a humbling experience to go from being the physician and the advisor and the expert to all of a sudden being the one who's now vulnerable, who's broken, if you will, and needs to be fixed," said Beck.

"To be fair, I think that for the providers and the people who talk about those cases, there's an element of therapy involved in that. It is stressful to take care of one of your own, it's stressful when somebody from your own community becomes sick, and I think it's important that we try to process that together because it makes everybody a little frightened," she said. "Being able to talk that through and support one another—I think it's part of some of that coffee pot chatter that goes on when somebody gets sick."

Taking Lessons Back Into Practice

For Beck, her experience as a physician-patient has given her precious insights into patient care that she has brought into her clinical practice.

"The biggest thing was that I changed the way I communicate with patients," she said. "It helps me to understand that many of the things that I thought, as a physician, patients wanted to know were not even close to what the patient actually wanted to know about."

Every physician should be a patient at some point.

She said that she would, from a breast cancer point of view, previously talk about treatments and the chances that they would improve survival.

"But as a patient," she said, "what you really want to know and you aren't comfortable asking is, How is my life going to change? How do I tell my kids this? How do I deal with the fact that I've just been diagnosed with a life-threatening illness, and I now have to confront my own mortality?

"There are so many other things that are whirling through your head while the physician is just rattling on and on about the treatments and the chances of this and the chances of that," she said.

Beck said that she has learned to ask more questions "so that patients have that opportunity to talk about some of the things that they're truly processing."

In terms of pacing the delivery of information, she added that she no longer spends a lot of time educating patients about breast cancer per se but instead tries to focus on the things that worry patients the most when they think about their breast cancer diagnosis.

"It winds up being a more meaningful interaction and it establishes a closer bond between the patient and the physician. It's more rewarding for me as well because I feel that I'm actually helping the patient, that we're aligning better," she said.

Even though it's not practical, Beck said, "there's a part of me that feels like every physician should be a patient at some point, just because it adds a depth to your practice and to your compassion, and it's impossible to get it without that experience."

Graff reports a consulting or advisory role at Genomic Health. Johnson receives postmarketing royalties for EGFR testing from Dana-Farber Cancer Institute and has research grants from Novartis and Toshiba. No other conflicts of interest were declared by those who spoke to Medscape for this article.

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