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Narrative and Healing

Home  >  Narrative and Healing  >  The Physician As Patient
Physicians As Caregivers for Loved Ones
By Neil Farber, M.D.

[As presented at the American College of Physicians-Alaska Chapter meeting http://www.acponline.org/meetings/chapter/ak-2008.pdf on June 26, 2008]

Dr. Neil Farber

Let me tell you a story.  My wife had the diagnosis of anaplastic oligodendroglioma.  She went ahead and had a craniotomy to remove the tumor, and during the summer of '97, she had adjuvant radiation.  And then beginning in the fall of '97, she started undergoing chemotherapy.  We were living in Philadelphia at the time, and we planned a trip over Christmas with our children to celebrate her recovery from surgery, from the radiation, from everything she had been going through.  And what was planned was that she was going to have a follow-up MRI a few days before we were to go away, and then come back and have the visit with the neurosurgeon after we got back, to find out results and what to do, if anything.

I thought to myself that basically, being a physician, I could call the hospital.  I was not on faculty there or staff there, but I was Dr. Farber, I could call and find out the results of the MRI and make sure everything was okay before we went.  Bad move.

I called up and found out to my dismay that she actually had a recurrence at that point.  We went ahead and went on the trip, because she was going to have the follow-up appointment with the neurosurgeon after we got back.  I went ahead, knew the results, knew that she had a recurrence, knew that basically she was going to have to go through more of something, and hid it from my wife and kids because I wanted them to have a vacation, figuring that it would be the last vacation we had together.

So the question is -- the end result, by the way, is she had stereotactic radiosurgery, had a follow-up craniotomy for radiation damage, and has been fine ever since -- but the question comes up, how do we balance being a caregiver or a patient on the one hand and being a physician on the other?  When are we overstepping our bounds?

Caregiver Overview

There has been an increase in lay caregiving in the population.  This is because of an increase in the age of the population and therefore an increased number of people with serious or life-threatening diseases.  It's been found that patients have been increasingly cared for by informal family caregivers, and actually there is some data to suggest that about a quarter of the adult U.S. population provides some kind of caregiving.

There's a great deal of burden on caregivers.  Caregivers themselves are often ill or elderly, and caregivers often place their own needs on lower priority than their patients', the ones they're caring for.  Caregivers also are prone to different problems.  Some of these problems are increased psychological problems.  There can be a lot of depressive symptoms in caregivers, as there can be in patients.  There can be a lot of anxiety about what the future may hold and about what they are dealing with: are they competent to care, are they doing the right thing for their loved one, etc.

It's been shown that there's a large number of psychosomatic problems in caregivers.  Basically, there are also increased social problems.  There can be restrictions of roles and activities on the part of the caregiver because of the fact that they're so consumed with caring for their loved one.  There can be strain in marital relationships because of this.  There are also increased actual physical problems in caregivers.  So we need to be aware of that when we're dealing with caregivers, but we also need to be aware of it as physician-caregivers.

It's been shown that about 20 to 57 percent of older patients' visits to physicians are accompanied by some caregiver, and this results in a transition from the patient-physician dyad to the patient-physician triad.  We need to understand caregivers' experiences and expectations, and this is especially true when we're talking about us as physician-caregivers.  And 20 percent of the time, the physician is the provider to the caregiver as well as to the patient.  So the responsibility of the physician to the caregiver is that caregivers may be reluctant to talk about their needs, and this is something we need to be aware of when we are specifically a physician-caregiver.  My wife complains because there are lots of times she will say, "You never say you're tired."  She can look at me, know I'm tired, and ask me, and I'll say, "No, I'm not tired," and it's because of the fact that I don't want to admit that.  So this is especially true for physician-caregivers, because of the fact that we're used to caring for others.  We as caregivers, therefore, need to ask our physicians to help us with these kinds of issues.

There are benefits to supporting caregivers.   If a physician is a caregiver, as they have their own needs met, they can more effectively attend to the physical needs of the patient, and also attend more effectively to the emotional needs of the patient.  In fact, social support is the factor that best predicts adaptation to cancer diagnosis.  It's been shown in some studies.

Supporting the Caregiver

So what kind of support is needed by caregivers?  Well, they need understandable, timely information, and as a physician, you don't always have all the information you need.  We may be general internists or subspecialists and have either a broad range of knowledge or a specific knowledge in our area, but may not have information regarding this specific diagnosis, prognosis, treatment, etc.  I didn't know anything about anaplastic oligodendrogliomas.  Not a clue.  Obviously I had the wherewithal to go and research it after I found out the diagnosis, but I didn't understand it initially.

Caregivers also need training for the technical and emotional aspects of their role.  Now you're going to say, "Well, a physician-caregiver is not going to need training."  Not true.  First of all, we don't have the training for some technical aspects like nursing care, etc.  And second of all, we certainly don't -- at least I didn't until I became interested in it many years ago -- have the training about the emotional aspects of the role.  So I think this is important.  Caregivers need recognition of their anxiety, their suffering, because they do suffer, as well as the patient, and the work that they do.  And they need guidance in defining their roles and responsibilities, and we'll talk a lot about that, obviously.

Caregivers also need support for setting limits on their sacrifices.  There was one study done on caregivers' perspective that was a study of 376 family members of Finnish patients who had died, and the results reveal that physicians probably are not attending to caregivers' needs.  Sixty-three percent indicated that they had little or no opportunity to talk about difficulties in everyday life, and 45 percent indicated that physicians asked about whether they wanted to talk about their situation.  So basically, we know that we as physicians are not asking our caregivers about their needs, and this is something that we in the Ethics Committee of the ACP are going to be investigating to some degree.

But conversely, we as physician-caregivers or physician-patients need to ask our physicians for information and help in dealing with our role as a caregiver or as a patient.  And that can be tricky,  because of some physicians having the attitude that if you're dealing with a physician, they can more effectively deal with these issues, and therefore, often times it's not brought up.

Now obviously the special situations I'm talking about this afternoon are those when the caregiver happens to be a physician or where the patient happens to be a physician, and everything I'll be talking about deals with both of these situations.

One of the things to think about is, who are caregivers?  When we are a physician who happens to be a lay caregiver, who are we caring for?  It can be any one of a number of people.  Obviously, the most significant thing to me was those who are caring for their spouse or significant other or partner.  But we could also be caregivers for our children, for our parents, for other relatives, or even sometimes for friends or colleagues.

Caregiver Boundaries

What I'm going to do is talk a little bit about a model of how we as caregivers can formulate where are the boundaries, where do we fit in the challenge, the borderline between being a patient on the one hand and being a caregiver on the other.  This model was initially formulated by Erik Fromme, who is at the University of Argonne, and who formulated the model based on some interviews with 23 patients who happened to be physicians as well, as well as his own personal experience and literature review.  He and I have worked together and have refined the model some more and have submitted it for publication.

Just to start, we're not talking about a question of whether or not it is appropriate to doctor someone that you love.  Because the overall feelings are, "To hell with appropriate, this is my child."  And those are the feelings that overcome us.  So a better question than that is, "What strategy can I use to maximize the health and well-being of my loved one?  What role does my physicianhood play in the overall scheme of things when I'm dealing with being a lay caregiver?"

Being a Doctor / Being a Family Member
 

One of the things to question is, given this situation, when we are caregivers for a loved one, someone close to us, are you better off acting as a physician or better off acting as a family member?  That's an important question that I think sometimes we need to ask ourselves.  Usually we have professional boundaries.  When we're dealing with a patient who is not a loved one, there are boundaries that come into play that allow us to be able to care for the patient as a patient and retain objectivity.  But these roles overlap when a family member is ill, or when someone you love is ill.

So what does it mean to doctor a loved one?  There are different things we're talking about.  For example, one could argue it certainly is being a doctor, as opposed to a lay caregiver, when you're ordering tests and prescribing.  But are you being a doctor if you give medical advice?  Are you being a doctor if you help interpret the results, or expedite things, or learn everything about an illness, or check lab results, or insist on a treatment plan?  Are we then acting as a loved one, or are we acting as a physician?  Where does the boundary occur?  Are there times when we can cross the line?  And there is a question of, "Am I doing the right thing by crossing the line if I'm going to do that?

One of the questions is, can one be objective in these kinds of issues?  One of the important aspects of being a physician is objectivity, that you're not so close to the patient, and this is why we have boundaries.  You're not so close to the patient, so that we can be objective and make decisions that may impact that patient's life.  One of the issues that comes up is the issue of denial on the one hand and saying, "This is nothing, I don't have to worry about it," or on the other hand saying, "This is really worrisome, we need to go gung-ho," and perhaps give in to excessive diagnostic and treatment maneuvers.

There are also a lot of issues regarding transference and countertransference when one is a loved one.  There are a lot of strong emotions and a lot of defense mechanisms, like denial, minimization, rationalization, etc.  So there are a lot of emotional issues that occur during this kind of situation.  If we look at it, basically, we're talking about overlapping between being a physician on the one hand and caring for an individual, whether that individual is a loved one or an unloved one, we are at times a physician caring for somebody.  On the other hand, we're a family member of that loved one, and there are other issues regarding being a family member.  And somewhere in between, they overlap.

Roles and Goals
 

So what are the different roles and goals of being a physician versus being a family member?  For the physician, largely, it's the relief of suffering, perhaps the cure if possible, or prevention or treatment at least of disease for all patients.  What about a family member?  Well, it's the love, but what else?  What else do we do as family members, besides loving the individual?

Advocate.  Protect.  Nurture.  Support.  Take under the wing and really care for, which is a very different role than being a physician.  And you can see that as the physician, we can maintain our distance, but as a family member, we cannot.  We have somebody who we're very close to.  There's bonding.  Those boundaries are down.

We have resources as a physician.  On the other hand, family members have resources that we as physicians don't, so we have sort of a combination of both.  As physicians, we have specialized knowledge of medicine.  We have experience with illness, nor ourselves or our loved ones, but we have a broad experience in terms of caring for our patients.  We have objectivity.  We can have empathy.  That is, we can understand somebody's illness and their emotions and what they're going through.  That's different than sympathy.  There's equanimity and a desire to help.

As a family member, we have the specialized knowledge of medicine, but we have the specialized knowledge of the loved one.  Who are they, what are their goals, what are their dreams, what are their needs?  We have experience with the loved one as opposed to experience with the illness.  There is love, hopefully.  There is certainly empathy, probably sympathy as well.  As a family member, we have time.  Hopefully.  And clearly a desire to help, as does the physician.

Resources

There are external resources that physicians have on the one hand and family members have on the other.  Physicians clearly have authority.  We have the authority to order tests, to examine the patient, to do the things that we need to do to care for our patients.  We have the advantage of having both office visits and/or hospitalization.  We have the medical literature available to us.  We have nurses and staff who are at our command, sort of.  We have referrals available to other specialized physicians, and only we have access to that, for the most part.  We have diagnostic testing that we can order.  We have prescription medications that we can order.  We have other therapeutic modalities that we can order or provide for with patients, and that includes surgery.  So we have access to things that a family member does not.

On the other hand, the family member has hopefully time with the loved one and observation of the loved one that's more intimate, and is at a greater understanding than the physician has.  The family member has some medical information.  Has hopefully trusted health care professionals.  Has perhaps family members in the health care field.  Has over-the-counter medications available and home remedies.

So you see that the external resources are more home-grown, if you will, than the physician has.  We as the physician have command of much more authority, much more available at our fingertips, to do for patients.  That is where we could get in trouble.

Doing Two Different Jobs

The jobs differ, between being a physician and being a caregiver.  The physician's job is to respond to the patient's needs, to diagnose and treat illness, to address the patient's concerns, to provide some reassurance and comfort as a physician, but again, with boundaries in place.  To give guidance and to treat symptoms.  Whereas the family member's job is to be that person's wife, parent, sibling, etc.  To be a member of the family as a whole, and then to support, to advocate for, to serve as a proxy, to advise or guide.  Very different roles.

So what should be our goals as a successful physician/family member or physician/patient?  One is that we need to be aware of the differences between the two roles.  This is critically important, that there is a difference between the two roles, and we need to be aware of it.  We also need to be aware of the advantages and disadvantages of playing both roles.  The advantage is that we have a lot more at our command.  The disadvantage is we can blow it big-time because of the fact that we don't have our objectivity.  And we are open for a lot of emotion in the family because of the fact that there is this countertransference.

We need to recognize the degree to which we are playing each role and why.  The best way of doing this is to be a partner with your family member and his or her health care team.

What Caregivers Can Do

Some of the actions that one can take as a lay caregiver are:

  • To explain the medical information.
  • To suggest the patient see a doctor.
  • To answer questions about medications.
  • To help navigate the medical system and accompany to doctor visits.

These are all supportive roles, the things that a lay caregiver has at their hands.  They can explain medical information if they go on the Internet and have it explained that way.  They can suggest the patient see a doctor simply because of their caring, because they know something's not right, and they can say, "You need to see someone."  They can answer questions about medications, again, if they go on the Internet, find out the information, access that, and then discuss it with the patient.  They can help navigate the medical system because of the fact that they may have knowledge about who to see, etc.  And obviously they have the advantage of being able to accompany to doctor visits.

What Physicians Can Do

The treating physician, on the other hand:

  • Can do patient counseling
  • Can refill a medication.  That's obviously something that a physician and only a physician can do, refill medication, prescribe medication, etc.
  • Can order and check tests. A patient doesn't have the ability to order a test, and certainly doesn't have the right and ability to check a test unless the physician has given them the information.
  • Can coordinate care, make decisions, send the patient to referrals, etc.
  • Can actually perform a procedure or arrange for a procedure to be performed.

I will give you sort of my take on how to deal with all of this at the end, so keep listening.

Sticky Situations 

There are some particularly sticky situations.  How do we deal with these?

For example:

  • When the loved one lacks capacity.
  • Issues about withholding or withdrawing life-sustaining treatment.
  • Academic physicians.  If I'm an academic physician and I'm a patient at the same time, or my loved one is a patient.
  • Medical errors.
Patients Who Lack Capacity

The first thing to discuss is when a patient lacks capacity.  Basically, we turn to someone else, as physicians, when a patient lacks capacity, because first of all, it respects that patient's wishes.  It respects that patient's autonomy.  It builds trust and it reduces guilt and decision regret on the part of the caregiver.  So one of the things to think about is surrogate selection.  Basically, we want to be able to respect the patient's stated preference.  There is a legislative hierarchy if there is no designated proxy.  In most states, it's the spouse, followed by adult children, followed by parents, grandparents, etc.

But one of the questions we need to think about is who would be most likely to know what the patient would have wanted.  We as physicians have a special take on this, because we've been through the system, and it's important that we not place our own values on the part of the patient.  That's one of the sticky issues of being a physician.  When the patient lacks capacity, obviously we would go to the proxy decision-maker, and any kind of sources of information that the patient might have, like written advanced directives, verbal statements, general values and beliefs, or at the worst, their best interest determinations.  This gets really sticky when we are a physician-caregiver and have to be the proxy, because we've been through enough end-of-life situations that we may be tainted, and our loved one may not have the same values that we do, which is why it's important to discuss these ahead of time.

It's important to recognize that there can be multiple goals of care.  They often apply simultaneously.  They're often contradictory.  I can't make someone better without causing them some discomfort, often times.  And certain goals may take priority over others as time changes.  The shift in focus often is gradual and is an expected part of the continuum of medical care.  So for that reason, it's extremely important that we as caregivers discuss with our loved ones those kinds of issues, if that's going to come up.

Withholding or Withdrawing Treatment 

The other sticky issue is withholding or withdrawing treatment.  I say it's sticky for a reason that I'll show you in a minute.  There are different types of treatment, obviously, and there are ethical and legal implications.  Basically, we need to think about the burdens versus the benefits of different types of life-sustaining treatment.  It's important to realize that life support can be short-term, and that any treatment can be withheld or withdrawn at any time.  There is no ethical or legal difference between withholding and withdrawing treatment.  From a legal perspective, that's been upheld by the Supreme Court.  It's also important to realize that any intervention can be refused.  There are common concerns, and this is where it gets sticky, because a lot of physicians have these concerns.  So we as physician-caregivers may have these concerns.

For example, is it legally required to "do everything"?  The answer of course is no, but a lot of physicians think that way.  Again, is withdrawal or withholding euthanasia?  And the answer is no, it's not.  It is the patient's right to refuse treatment, and that is not euthanasia.  So are you killing the patient when a ventilator or a feeding tube is removed?  No, the patient dies from their underlying disease.  But a lot of physicians have different values from that, and it's important to recognize these issues when we are physician-caregivers.

The physician in this role helps the patient and their family to elucidate their own values, decide about life-sustaining treatments, dispel misconceptions, understand the goals of care, and facilitate decisions.  But when we are a physician ourselves and are a caregiver at the same time, these roles get mixed.  Some of the life-sustaining treatments include things like resuscitation.  That's the one everybody goes for, a code/no-code decision.  There's much more to it than that.  We're talking about goals of care, so that's only one aspect.  Other things can include, for example, elective intubation, surgery, dialysis, blood transfusion and blood products, various diagnostic tests, artificial nutrition and hydration, i.e. feeding tubes, antibiotics, other treatments, future hospitalization or ICU admissions -- all of these can be withheld or withdrawn.

So the reason I say this is sticky is because after doing a survey of physicians, we realized that not everybody has those attitudes.  Not all physicians do, anyway.  We did a survey looking at physicians' attitudes about these issues.  We had heard of some at least anecdotal reports of physicians holding differing values about these kinds of issues.  We didn't really have a lot of data about whether physicians would accede to patients' requests about withholding and withdrawing life-sustaining treatment.  So we asked hypothetical questions.  It was a nested study, in that we included different variables in each of the questions.  The variables were withholding versus withdrawing different types of treatment -- was there a difference between withholding and withdrawing?  Was there a difference between an alert versus a demented patient?  The alert patient who was, for example, quadriplegic and said, "Stop," versus a demented patient who couldn't say, "Stop," but their surrogate said, "They clearly said ‘stop' previously."  A non-terminal versus a terminally ill patient, and then the different types of treatment.  We looked at four, being ventilator, artificial nutrition and hydration, dialysis, and antibiotics.

In this case, about a third of the physicians had any kind of training about this, and what we found is significant differences.  For example, physicians who responded were significantly more likely to withdraw a ventilator or dialysis than they were to either a tube-feeding or antibiotics.  They were significantly more likely to withhold medical care than to withdraw medical care.  They were significantly more likely to listen to the requests of a demented patient, i.e. the surrogate of a demented patient, than an alert patient.  That surprised us.  But basically what they were doing was making a value judgment, that somebody who was alert needed treatment.  And they were significantly more likely to listen to the requests of a terminally ill patient than a non-terminally ill patient, again making a value judgment.

So because of this, we as physician/caregivers may have values that may be different than our loved one, and we need to listen to them.

Academic Physicians

Being an academic physician plays an interesting part in all of this, and that is that we interact with residents and students all the time, but when we're a caregiver of a loved one, we're having to sometimes interact with a physician who is a student or a resident.  And then one has to decide, what role does the physician versus patient play?  They may function as a patient, but they can also teach the resident or student.  Is it appropriate to do so?

The classic case was -- I forget who, someone who was famous in medicine, who went into the Emergency Room dying because he was bleeding out from his dissection, and taught the residents in the ER about the signs and symptoms of the dissection as it was done.  I think it basically shortchanges the patient's right to be a patient and be cared for and have their emotional needs met.  I don't think that at that kind of time we need to be teachers.

It can also interfere possibly with medical care, for example, in terms of history-taking and medical decision-making.  If we are a patient, or we're the caregiver of a patient, if I as an academic physician come into my hospital, my residence, and the students know me, they can be threatened.  And they may try and defer to me, or not do things that they should otherwise do, because of the fact that I am who I am.

It may also interfere with the education of the student or the resident in terms of lack of autonomy.  They may feel threatened enough that they don't want to make decisions, just give it over.

Medical Errors 

The last issue is one of medical errors.  This is a difficult issue.  The issue is a loved one may be harmed because of a medical error, and yet we still have to deal with that problem.  That's a very difficult issue to deal with.  The other thing is sometimes the physician/caregiver may feel responsible.  "Should I have stepped in?  Should I have gone beyond the boundaries and done something?"  And that's a difficult issue to deal with.

Boundary Questions

Questions to ask yourself in dealing with the boundaries and the roles between being a patient or a caregiver on the one hand and being a physician on the other:

  • Am I getting too involved?
  • Am I acting as a physician or a family member or both?
  • What do I hope to accomplish by doing this?
  • What options do I have? (Sometimes we may not have an option. If we know that somebody is not getting the care that they need and we have the medical literature to support it, we may have to step in and say, "Hey, you're wrong.")
  • What might happen as a result of my involvement, to either the physicians I'm dealing with, the medical staff, the other staff, my family and myself, and to our relationships?

I think the most important question to ask, and one that helps guide us -- and this is one of the things I emphasize, one of the things that sort of one of the main features of our paper -- is: Could I perform this action if I didn't have an M.D. or a D.O. degree?  Could I still do this?  If the answer is no, I think we have to be very careful.  We have to be very careful about whether we want to really do that.  There may be times when we have to, when we feel that it's so urgent, such an important issue, that we may have to step in.  But I think we have to at least pause and say, "Do I really want to do this?"

Question and Answer Session

Q:        My experience when not a loved one but a patient comes in with a caregiver is that the caregiver frequently directs the conversation to their own complaints.

A:         Sometimes.  And in fact, 20 percent of the encounters in Rutter's study, that was occurring.  And in those kinds of situations, we need to care for the caregiver.  If we're the physician of the caregiver, it's appropriate to say, "Gee, that's a problem we need to deal with, I want you to make an appointment with me as soon as possible."  If we're not the physician for the caregiver, we have to say, "Gee, that's really a significant issue.  Do you have a physician who cares for you?  If the answer is yes, you need to make an appointment as soon as possible.  If the answer is no, and we have space in our panel, the answer is I need to see you and I need to do a whole physical exam, and make an appointment as soon as possible."

Q:        I'm curious, the research that you've done in a lot of areas that shows that there are these discrepancies in attitudes versus -- I don't want to say the right answer, but sort of the pathway that seems more consistent with professional behavior.  Is there any literature or any study of needs of intervention, different things that actually can change those things?

A:         Yeah, that's a good question.  There's a whole body of literature about changing physician behavior.  Most of it unsuccessful.  There are a couple of tenets that sort of need to be adhered to in terms of changing physicians.  One is that it has to be repetitive.  So for example, if you believe something else that I said this morning, you would need to hear it from me again and again and again to be able to continue to do it, or you might lapse back into your old behavior.  Medical education in general works better when it's interactive and when it's learner-driven, and we're going to do some interaction stuff tomorrow, so that might be good.  And third is, the best way of changing behavior is one-on-one detailing, which the pharmaceutical industry learned a long time ago, and some physicians are now experimenting with it.

Q:        Does it differ, changing attitudes and how that translates into behavior, from anything in regards to medical decision-making of other sorts?

A:         Not that it seems.  And remember that basically, there are always three components.  There's knowledge, attitudes, and behavior.  And you need both knowledge and attitudes if you're going to have a certain behavior.  So basically, I can give you all the knowledge you want, but in terms of the attitudes, we need to define -- working on that, and giving people opportunities to try out the behavior.

Q:        I may have a skewed experience here, but with both of my parents and with all five of my children, I have had to intervene in their medical care at a critical point, each one of them.  It was totally disruptive, but I knew that the wrong thing was happening, and knew that they didn't know -- just clueless with things, in my mind -- a little hubris there, but they were wrong.  And I think if I hadn't done that, I mean, and I don't believe in doing that, I tell everybody not to do it, I don't believe in it.  But then suddenly the moment comes, and what you do is you stick with it till you get the right person, and you can back off again.

A:         Did you order anything, or did you just say you needed to see somebody else?

Q:        I took them away.  Took them to another place.

A:         Okay.  But you could have done that if you weren't a physician.

Q:        But I don't think I would have known.

A:         But that's okay.  We have the knowledge.  We can't pretend like we don't have the knowledge.  And that's okay.  But basically, we can't act on that knowledge, is the thing.  And I have exactly the same situation.  My wife was at one institution where she got her craniotomy and her initial radiation and chemotherapy.  And then when the returns came back, it was suggested at the initial institution that she have gamma knife stereotactic radiosurgery, and they didn't have that available.  So we went to the place -- at that time there were only a couple of places in the country that had it -- we went to the place in the same city that did have that available.  And that was under the aegis of both a neurosurgeon and a radiation oncologist.  So she went through that, and then she had a follow-up PET scan and an MRI, and the MRI showed something there.  The PET scan showed some increased activity.  And the neurosurgeon who was part of that program looked at us and said, "You have a recurrence.  My recommendation is that we do gene therapy.  I go in, take a piece out, and we do gene therapy.  That's what I want to do.  That's the way we treat this."  And I looked at my wife and said, "Time out!  We're getting a couple of other opinions here."  And we went to someone up at Harvard and we went to someone at Sloane, and both of them said, "That's fine, but this is probably just radiation necrosis.  Follow it."  Which is what we did.  She eventually had to have another surgery because she was getting symptomatic, and at that time there was absolutely no tumor there.  It was all radiation necrosis.  So I had the same experience.  And I had the knowledge of, "Wait, this is wrong.  Gene therapy is experimental.  He's just looking to get a couple of patients into a study.  We are not going that route."   Yeah, I had the knowledge too.  But taking her away from that -- I could have done that if I had been her husband and I had been on the end of that.

Q:        Any comment on situations where you may be the most qualified immediate person to provide treatment?  I mean, I've had situations in my own family, in a rural situation, I've seen situations in foreign countries....

A:         Special circumstance.  When you are in an area where, life or death, ain't nobody else around, you obviously have to do it.  There ain't no choice.  Because to not do it means the person's going to die, or they're going to get seriously ill or whatever.  In those situations, obviously, bets are off.  If you have to, you have to.  It's just like, if I'm not a physician but I know how to put in a tracheostomy because someone is choking, if they have something lodged and a Heimlich didn't work, I'm going to go ahead and stick a tube down.  I'm going to go ahead and stick a pen into their throat, even though I'm not a physician, because I know how to do it.  That's a special circumstance.

Q:        I'm really interested in what you've done here, but it seems to me that you've idealized the personal physician in terms of knowledge and skills and so on, and my experience often isn't matched by that.  So that the temptation, if you will, to intervene, or the feeling you should intervene, is not uncommon in a physician-caregiver.

A:         Sure.

Q:        And I've found myself often in situations making suggestions.

A:         And that, again, goes into the thing of as a lay caregiver, you could have gone on the Internet, gotten this information, and said, "How about ...?"  I have patients do that all time with me.  And making suggestions is still acting as a caregiver.  The thing you're not doing, though, is you're not saying, "I'm going to go ahead and get an MRI on you," or "I'm going to go ahead and give you blank medication for this."  Because that crosses the boundary to some degree.  So making suggestions -- again, if you ask yourself, "Could I do this as a lay caregiver?  Could I do this without an M.D. degree?"  The answer is, "Sure you could."  You could make suggestions.  You could send somebody to somebody else.  That's perfectly acceptable.

Q:        I think this issue of finding another opinion or physician, sort of in the heat of the moment, is like you as a physician feel strongly that the person's not getting optimum care, and you need someone else to provide that care because the person doing it is not doing the right thing -- I don't think the lay public has that kind of influence.

A:         No, they don't.

Q:        I remember a time when I was a resident and my mother called me and said, "You know, your grandmother fell last night and they found her in the bathroom on the floor and they took her to the Emergency Room and they looked at her and they said, "Yeah, she looks about the same as she always does," and sent her home, and I said, "She needs a different doctor."  They find her laying down in the bathroom and can't get up, and she doesn't even get an X-ray.  And I was a physician from miles away saying, "This is not acceptable to hear," and my parent, who is a college-educated person who cares a lot about her mother, didn't know what to do, didn't have any idea how to handle that situation.  And it turned out she had pneumonia, and she got treated for it.  But I called her cardiologist and said, "There's this really awkward situation, she trusts you, I know you're looking after her, I know you're not ... after a fall.  Will you admit her to the hospital?"

A:         But you didn't admit her, and you didn't treat her with IV antibiotics.

Q:        I didn't, but nobody else would have been able to go to her cardiologist and say, "Look, I know this is not your job, but this is your patient, and someone needs to do it."  So I think as a physician I was definitely overstepping the bounds of what anybody else would have been able to do.

A:         Well, were you overstepping the bounds?  We have more muscle because we're a colleague.  That's clear.  And because we have the knowledge.  But a patient who really has a lot of chutzpah could do the same thing.  I mean, they could, if they had enough knowledge, going through the Internet, if they had, you know, force behind them, they could do the same thing.  What they couldn't do is admit the patient and treat them with IV antibiotics.  But you're right.  That gets very touchy, and it's on the borderline, and you have to be very careful, and at times it's the "To hell with it, it's my child."  And those emotions come up.

Q:        I tend to remind patients that most of the time in the office I wear a tie, and that's so they can reach out and grab onto it and choke me a little bit and get my attention when I'm not paying attention to them.

A:         That's true.

Q:        Your comment back to both the last comment and Dr. Dale's before that included comments like, "You need to be very careful."  Given the change in medicine which Dr. Dale referenced, which is we don't have a lot of continuity, people can change doctors -- given the good literature on errors and the frequency of errors, any of us who've had anybody in the hospital, I don't think one needs to be very careful.  I don't think one needs to be a doctor.  One needs to know that anybody with any clinical knowledge has to watch very carefully.

A:         Oh, absolutely.

Q:        And therefore -- may need to step in, any time that, "Wait a minute, something's wrong, or that's not for this patient, or something's different."

A:         Absolutely.  What I said to be careful about is making sure that as a caregiver, we're not ordering things.  That we step over the line and start acting as a physician rather than a caregiver.  That's fraught with a lot of issues.  But being somebody as an advocate, which anybody can be, absolutely.

Q:        What's the difference between patient advocate and unwanted consultant?

A:         It's in the perception of the one one's talking to.

Q:        But it's a difficult road to -- balancing act, so I'm not sure sometimes how to do that successfully.

A:         Yeah, I don't have any advice how to do that, but certainly I think if you spot something that is wrong, I think it is appropriate to step in and say, "Hey, wait a minute."  And I think I as a physician, maybe I'm different, but I as a physician, if somebody who was a caregiver of a patient of mine stepped in and said, "Hey, wait a minute," I would welcome that.

Q:        I'm in the interesting situation that I have many family members here in town, so when they're talking in the past, I said, "Oh, that sounds really bad, you need to talk to a doctor," and I'll dish them off to different colleagues.  A couple of times I've had a situation where I'm on call weekend and they're in the hospital.

A:         Yeah.  I don't know what to do about that.  I'm at UCSD, and I'm in a 16-member physician group in our La Jolla practice, and there's another group of five physicians down at Hillcrest.  But we cross-cover, and I specifically -- everybody hold your ears -- we specifically went to a family physician at UCSD, because I didn't want to have the possibility of me being sick and being the physician on call.

Q:        Well, actually, I've gotten help from other specialists, like the cardiologist I know, "That's my aunt, I can watch over her," but we get into a situation where....

A:         Yeah, that's tricky.  Somebody had a question from this morning.  Did I answer that question?

Q:        That issue of once you say "tumor," that people have amnesia for the rest of the visit, and trying to bring things up -- I certainly have had the experience where I was like, "You know, we've got your test results in," the nurse calls and says, "Your test results are in and the doctor would really like to talk to you about them."  And people show up with their entire support group and they know it's bad news, because otherwise you would never call them in.  They don't want to set the stage.  They come in and they say, "What does my scan show?"  And if I'm thinking, "Gosh, I need a little more information about it," it's going to be -- I can't get any of that information because they can't talk to me until I tell them what their scan shows, and I'm just wondering if you have any advice for putting people off, because they're there for their results.

A:         Go with the flow.  That's the most important thing that I would say.  "What do you think has been going on?"  I'd launch right into it, "What's your feeling about all this?  What do you think has been going on?"  See where they are and say, "I'm scared I have cancer," and then the answer is, "I'm afraid I have bad news for you, we don't know yet what it is, but there's a mass there," whatever.  Some people do that. And you just go with it.  The advice I gave was, like, a structure thing, but it doesn't always work that way.

Q:        One of the things I've noticed is a lot of times when you have to call people about something on the phone, "You have a mass," if I've already scheduled their biopsy, that seems to make things better.

A:         Sometimes.  Sometimes if you already have a plan in place.  Obviously we want to try and avoid the phone call thing, but sometimes we end up having to.

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About the Author: Clinical Director, La Jolla Internal Medicine Associates
Professor of Clinical Medicine, University of California at San Diego
 

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