THE MPN CLINIC ROUNDTABLE
The Good Patient
What is a good patient? Do our behaviors during a consultation and thereafter affect the outcome of our MPNs? Is there something we do that helps — or hurts — our chances to develop a strong working relationship with our hematologists? Five leading MPN specialists help provide some useful guidelines in this edition of MPNclinic.
As doctors we have the enormous privilege of touching and sometimes changing lives. The art and science of medicine has endured down the ages and defines medicine as a profession, whatever a doctor’s area of practice. Some of that art lies in an ability to synthesise conflicting and incomplete information to reach a diagnosis; deal with uncertainty and manage risk; share information openly and honestly with our patients, always respecting that the final decision is theirs.
Another aspect of that art is to partner in a relationship with your patients, this relationship has changed almost beyond recognition in recent years. Deferential respect for paternalistic wisdom has rightly and healthily given way to a much more equal standing between the two parties – at its best it remains one that is based on respect for knowledge, expertise and experience on the one hand and respect for the humanity of the patient and their wish to know on the other. Recognising the knowledge and experience of the patient as well as the knowledge and experience of the doctor, and building on that rather than ignoring it: this is what a good interaction with your doctor is all about. Mutual trust and respect is what matters. It’s more than half the battle.
So what else is helpful in a consultation?
Think beforehand what you want from the meeting and consider making a list as well as bringing someone with you if you think complex things are going to be discussed; believe it or not we also are thinking about your case before we see you. Sometimes I start a consult with a patient who has been referred from another haematologist with the statement “I can see your doctor would like us to discuss x and y but are there additional or different things you would also like to cover?” Try to be honest and open we can’t help unless we understand concerns and perhaps fears
Time may be critical I like to plan and make sure for people coming to only see me once that I make sure its really worth their while and they have the chance to ask all that they what and we have the time to do this. If any of my patients are coming with a complex concern which will need more than a standard time I think its helpful that they warn us in advance so that we can try to allocate that time or be prepared to prioritise the list of questions.. I never like to rush important discussions so sometimes patience if we are overrunning is helpful.
Lastly I think it’s a great habit to keep a record of blood and other results. This is tremendously powerful and also practical
Ideally all patients where possible should understand their disease, be fully informed about treatment choices, decisions and potential complications. Undoubtedly MPN forum and other groups/organisations do a great job in supporting this. Lastly I think it’s a great habit to keep a record of blood and other results. This is tremendously powerful and also practical. The disease course for MPN is long many things happen to you our patients, we start a treatment you hopefully experience the benefits but also sadly side effects. If you are able keep a longitudinal record in a spreadsheet or a notebook we provide these for our patients.
In summary trust, respect, openness, honesty, planning, good communication – all components of success in any relationship also underpin a good doctor patient relationship.
What makes for a good patient/Hematologist relationship? A better way to phrase the question “what is the basis for a good patient hematologist relationship” might be “what is the basis for a good patient/physician relationship”?” I use the term physician, because hematologists are (or should) be physicians first. As I have seen the practice of medicine evolve in the past half century, one of the most important observations physicians of my vintage have made, is that patients now are always far more knowledgeable than in the past for better or worse and are influenced by what they read on the internet. From the standpoint of a specialist practicing in 2014, it must be accepted as a given that patients will bring in articles that they have read in the newspaper, magazine or even medical journals or on the internet. Thus, the interactive process has become more involved and lengthy. The list-serves they read can also be a source of misinformation and confusion which can also lead to anxiety.
I always encourage patients to continue their informative process despite the limitations I mentioned; this helps fulfill my role as an educator. Informed patients are always less anxious than those who are not. Even in the era of diminishing time allotted for patient encounters, the hematologist physician must allow time to relieve the anxiety of the patient.
A favorite comment of mine when asked about prognosis is that more patients outlive their prognosis than the doctors who gave it.
Speaking as a patient myself (for all doctors are patients) the physician must understand the concerns of the patient, not only regarding their illness but also key personal issues and their ultimate life goals. In dealing with a fatal illness, if there be one, it is always important to understand the near and long term goals of an individual: is it the graduation of a child from school? The birth of a grandchild? The achievement of major professional event?
A favorite comment of mine when asked about prognosis is my reply that more patients outlive their prognosis than the doctors who gave it. Nevertheless, it is the competent, trusted physician, at least in my experience, who makes the final judgment call in the great majority of cases as has been pointed out, even for the physician using “shared the decision making”.
A good rapport is established by a good examination. I note that many of my junior colleagues no longer examine patients in the old fashioned way, relying as they do on more up-to-date techniques such as CAT scans, ultrasonography, MRIs etc rather than the laying on of the hands. (What joy there is in finding in one of my hematology patient an undiscovered cardiac murmur that no one has found before!) From our standpoint, we have to understand when a patient brings in a 2 or 3 year old article relating to some cure of an MPN in a mouse strain, we must refrain from saying “when you grow a tail, we will consider this an option for treatment”; this is not good for establishing patient/physician rapport.
One must also remember that there are broader aspects of patient care we must deal with in addition to the technical issues of which JAK2 inhibitor or potent chemotherapy agent is advisable. The complexity of the hematologic problem should not overshadow overall good patient care. Does their appetite need stimulation? Are they exercising? Are they getting enough sleep? In this sense, the “very specialized” specialist still retains the role of the family physician which is no more or less than those of a good physician.
The ideal MPN patient. First, let me start by saying that there is no such thing as an ideal patient, but I do think there are productive and constructive relationships between MPN patients and their physicians and there are other relationships which are less helpful. The value of these relationships as with all relationships is really around communication.
MPN patients are an incredibly mixed group; from teenagers that have had a blood clot to individuals in their 80’s or 90’s. People bring their own wealth of experience, family members, and other medical problems to this conversation. I’d say that there is no one path that one needs to follow, nor would it be appropriate or wise for me to say that the burden falls squarely on the MPN patient.
The value of the relationship between physician and patient is particularly crucial because we all hope that it is a long relationship. The MPNs as a chronic illness require a different sort of relationship with your physicians than one might have with very acute episodes, such as a strep throat or even an acute event, such as a one-time surgical procedure or myocardial infarction.
It is a relationship that needs honesty; it’s a relationship that needs responsiveness in terms of questions and information; and it’s a relationship that is really two ways. It is true that communication, given the limited time we have together as physician and patients, is always a challenge, so things that can be helpful is having given some thought or preparation for when we visit; what questions would you like addressed; what issues have arisen since we visited last, whether they be in terms of signs or symptoms of the disease, issues of your medications, questions about therapies that are evolving, or even things that you’ve heard about on the internet that you think might be applicable to you.
There are things patients have done that can be very helpful, but again I would view them as being elective. In diseases such as MPNs things that I think have been the most helpful is when patients have kept a chronology of the events that have occurred with their illness; particularly for individuals that have had an MPN for many years or even a decade or two; a chronology of when you run medicines, what doses, why they were stopped, if you had events, phlebotomies. These sorts of things can be incredibly helpful and can tremendously expedite the discussions.
However, I will say as a physician I do find this incredibly helpful to see the pattern of changes
Other individuals have chronicled the change in their blood counts on spreadsheets, notebooks or in other manners. This is more labor intensive and certainly would not force this on anyone who is not inclined to organize their values in such a way. However, I will say as a physician I do find this incredibly helpful to seeing the pattern of changes with the counts with the disease; particularly when individuals have gotten their blood counts in multiple different areas and multiple different sources. Most laboratories will present lab values to us as a single sheet at a time and if an individual has literally a phone book of hundreds of prior laboratory values it is a bit insurmountable to be able to get a serial sense of the behavior of these counts. Sometimes not every count is needed; just key transitionary counts or changes over time.
I conclude by saying the rest in terms of communication is really honesty. Give me an honest sense as your physician about how you feel, about your concerns, about your fears of the future or for the unknown. As a long term relationship it is one that must be built on trust, communication, and appropriate expectations. If I have in my calendar 30 minutes to visit for a patient and they have two hours’ worth of questions, as a physician I must be honest with them that I do not have the two hours at that moment to share with them and then we choose to prioritize the questions that they have and try to set up additional visits to try to address their needs. As a physician I find it’s important for me to be very honest with my patients as I hope that they are able to be honest with me as well.
Every patient that comes to see me becomes a member of my extended family, and I have no hesitation to tell that to each patient at the very first visit. I advise patients about their condition and therapies as if they are my next of kin, no difference. My goal is to engage a patient in the life long journey with me in addressing his/her disease, with a goal of extending life for as long as possible, with the best quality as possible. I tell the patients that we would become best friends for the rest of the time, whatever that time is. I don’t tell patient how long they are going to live, since my goal is to change the outcome, and we have already done that for many, as you know. this is how my relationship with a patient starts.
The patient becomes a member of the MPN team, the most important member, the decision maker. Through education, discussion, engagement; I am here to help. Below are some answers to your questions that explain that process.
How can patients best support your work with them? Become a member of the team, we are here to help.
How do you handle patients who won’t consider clinical trial or stem cell transplant? Same as any other patient. patient first, my work interests second.
How do you overcome patient denial of the severity of their disease? Education; it may take some time.
Or, on the other hand, excessive worry over future progression? Discussion of specific topics as needed during visits.
How do you encourage family members and patients to participate actively in their care? Talking with patient and family members about what is going on at every visit; discussing points of concerns or confusion – clarity and simplicity is very valuable.
Basically, what, in your clinical experience, makes for a good MPN patient? There are no bad MPN patients.
What can patients do to prepare for a clinic visit? My goal is for patient to be fully engaged and understand what is going on and why, and be integral part of decision process. With that in place patients do not need to specially prepare for each visit.
Is the good patient one who is prompt for appointments, shows up with appropriate medical records, follows orders, takes meds as required, and reveals only the required relevant symptoms that might guide treatment? No. people are different, and when MPN happens, they are no different, just need to adjust to live with the disease. No one is perfect; there are no bad MPN patients.
What actually happens when you encounter the difficult patient? We address any and all issues that may come up. This is not a problem, we are all just people.
What then are those characteristics that enhance treatment outcomes? Patient participation certainly helps.
What behaviors get in the way? One thing for sure, noncompliance with plan of care will benefit no one.
Finally, How do you help your patient participate in her or his treatment creatively and positively? Educate, discuss, engage.
The Good Clinical Trial Patient….Clinical trials are a cornerstone of treatment of all blood diseases, including myeloproliferative neoplasms (MPNs).
Several members of the health care team are critical to the successful administration of clinical trials, including the principal investigator/physician, nurse, and study coordinator. Because of the investigational nature of drugs being evaluated in clinical trials, key principles that need to be adhered to include informed consent, minimization of potential harm to the patient, and adherence to the protocol to optimize evaluation of a drug’s safety and efficacy.
In this regard, the patient plays a central partnering role with the health care team in achieving these aims. The clinical trial patient should be a self-advocate who takes an active, rather than passive approach during all phases of the trial process, including eligibility evaluation, on-study treatment, and follow-up after trial completion.
The following highlight some of the characteristics of the ‘good’ clinical trial patient
- The patient takes time to review the informed consent and write down questions to help educate him/herself about the protocol study drug, schedule of visits, time commitment, drug side effects, and potential for interactions with medications they are taking for other conditions. The patient should also find out from the health care team what costs are covered by the trial versus insurance, and if there may be expected co-pays that could contribute to unanticipated financial toxicity.
- The patient provides a detailed history of prior treatments for MPN, current medications, and allergies
- The patient is compliant with the study medication
- The patient attends all scheduled trial visits
- The patient immediately informs the trial team of new concerning symptoms. This is important since such symptoms may represent side effects of the study drug or disease progression, or other factors unrelated to either. It is incumbent upon the treating physician to dissect the underlying cause of change(s) in the patient’s condition so effective care can be provided
- The patient calls the trial team before taking any new medications during the study
- The patient communicates any new concerns to the trial team in a timely fashion. For example, if the patient has new symptoms that require evaluation in an emergency room or admission to the hospital, the patient or family members should immediately inform the trial team of this development; this is important for several reasons: 1) the trial team needs to assess whether to hold the trial drug; 2) the trial team will usually be required to submit an adverse event report to the study sponsor as part of the safety requirements of the trial; and 3) an informed trial team will be able to provide guidance to the ER or hospital doctors regarding the patient’s MPN and what concomitant medications or procedures are allowed during the course of the trial.
- Trials often require patients to follow-up at scheduled intervals after formal completion of the trial, regardless of whether the patient responded to the study drug. Maintaining communication with the study team is important so they can assess how you are feeling, whether you are taking new medications (approved or investigational), and what is the status of your disease.
- The patient as diarist: physicians and study coordinators appreciate patients who provide documentation of their symptoms, drug intake, and frequency and number of red blood cell or platelet transfusions. Such data is very important for trial records.
- The patient cannot be expected to undertake the journey of a clinical trial alone. He/she should ask for support from family and friends and the health care team on multiple levels—emotional, spiritual, and physical assistance. Practical issues such as being a second ear at appointments, providing transportation, and helping with mundane chores at home can render the oft-challenging road of being on a clinical trial that much easier.
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