COM M E N TA RY

Patient perspectives
Exploring patient values and preferences
Cathy Telfer MEd

I
was born in a time when families had one doctor who difficult to understand the numbers and how you might
served all their health care needs from birth to the grave. feel about a health decision 10 or 15 years from now.
The doctor was one step above the head of the house-
hold and was almost always male and definitely always Choice and information
right. We did not question his advice or directives. As the Making a choice without information is very difficult. How
delivery of family medicine evolved toward the patient- do I know the benefits and the harms of a screening test or
centred approach, patients took on roles as partners with treatment, the side effects, or the potential outcomes of deci-
physicians, bringing meaningful experiences, values, pref- sions? I want guidance from those who do know but unfor-
erences, and expectations. Patients became more adept at tunately there rarely seems to be enough time in an office
advocating for their health care and that of their families. visit to discuss pros and cons, risks, and short-term and
As a retired educator and a cancer survivor with addi- long-term results. If given a choice of next steps and time to
tional chronic conditions, I am not an expert in any medi- make a decision I, like most patients, would search for infor-
cal field, but have personal knowledge of many areas of mation. There is so much available on the Internet and it is
health care. I am so grateful for the professionals who difficult to be sure the sources are reputable. Guidance from
treated my basal cell carcinoma and malignant melanoma, physicians or health care teams is essential to determine the
cured my husband of bladder cancer, helped my parents credibility of the data and to sift through conflicting details.
stay healthy enough to live independently into their 90s, Information without choice is no better. Unlike years
allowed my sister to survive more than 50 years with ago, most people no longer want doctors to give them
type 1 diabetes, and helped me thrive in spite of 2 autoim- quick details and single solutions without allowing
mune diseases and related issues. All of this has encour- them to explore options. Many patients want to know
aged me to become an advocate for myself and others. that they have their doctors’ support to investigate the
melding of medicine with complementary or alternative
Pressure on patients to decide approaches. Some patients find relief with complemen-
The medical profession has become much more techno- tary therapies and want their doctors to work with them
logically advanced and aware of the importance of preven- as partners to learn what might supplement rather than
tion and detection of disease before symptoms appear and interfere with what is known to be effective.
before treatment becomes imperative. Screening for rele- Research has given us so much more information than
vant age groups is available at no or low cost to the patient in the days when there was one doctor for each lifetime.
and has proven to be very effective for certain diseases. For For example, we now know that many types of cancer
example, we believe that early detection can reduce the can be prevented by changes in lifestyle—lung and other
effects of breast cancer and colon cancer, and screening cancers related to smoking, and, in my case, skin cancer
for at-risk populations is available for other diseases such resulting from long-ago sun damage. We know so much
as type 2 diabetes. We know a great deal more about how more about environmental carcinogens and the effects of
to prevent heart attacks and strokes, how diet and exer- external factors on our health. We know that lifestyle deci-
cise affect health, and how our emotional state affects our sions made now might substantially affect our heart health
physical well-being. If information is power, why would we in the future. With this knowledge comes choice about how
not want to screen? Why would we not want to know how to adjust habits to increase well-being. We have the power
to make changes to our habits to live well? to change outcomes for ourselves and our loved ones.
For patients, it is disconcerting to be offered choice
in screening decisions or treatment options. Doctors Expanding the patient’s role
might say “These are the possibilities—which would The role of patients has expanded to that of active par-
you prefer?” As a patient, you do not know what you ticipants in not only their own care but in that of others
do not know. How does one choose without knowing with similar conditions or diagnoses. There are increas-
what the doctor knows? The patient often feels a time ing opportunities for patients to help others by enroll-
pressure to decide and that, too, is an issue, especially ing in clinical trials, to contribute to increased medical
if you have already waited months for other diagnos- knowledge through genetic testing for diseases such as
tic tests or appointments and are fearful of waiting any hemochromatosis or some types of cancer, and to perform
longer for treatment to begin. Further, when presented altruistic service in the health care field through volunteer-
with both the benefits and harms of screening, it is often ing. This meaningful shift in thinking and the inclusion of

10 Canadian Family Physician | Le Médecin de famille canadien } Vol 64: JANUARY | JANVIER 2018
COMMENTARY

empowered patients opens exciting opportunities for fur- • Explain next steps: what is going to happen from this
ther involvement in medical research and health care. point, when I need to see you again, what I should
Not everyone wants to become an integral member of watch for, who I should contact if I run into problems.
their own “health care team,” however. Some still want • Encourage me to take advantage of opportunities to pre-
to be told what to do and will willingly follow the doctor’s vent or improve health issues for myself and loved ones.
advice without question. How is anyone in the medical pro-
fession able to determine what type of patient they are deal- What can patients do?
ing with, what their preferences are, what they value? Is this Patients can maximize the benefit they get from a doctor’s
a patient who wants choices and to be involved in decision appointment by being prepared. Here are my suggestions:
making or one who wants to be directed to a single action? • Go to your appointment prepared to share your values
Is this patient one who wants quick and aggressive action and preferences while you and your health care team
or one who prefers to take time to consider alternatives? develop a plan together. Reflect on what is important
Not everyone is able to clearly articulate their ques- to you and what options you might prefer.
tions, fears, or values. It takes a skilled physician to • Bring someone with you as a second set of ears to help
determine if what is being said is what is meant. It also with questions and to take notes for later reference.
takes time, often more time than busy doctors have to • Come with a few general questions and later, as you pro-
devote to individual patients, but it is time well spent. cess the information, record additional questions to ask at
Everyone is different. Every disease takes a different a follow-up visit; ask about screening benefits and harms.
path. Everyone has emotions and values and prefer- • For testing situations, when symptoms are present,
ences. So—how to help? document any physical or emotional changes and
their frequency and duration.
How can doctors help? • Seek information and support from your full health
Here are my suggestions for doctors on how to explore care team, such as a registered dietitian who can help
patient values and preferences. The Prevention in you learn to read nutrition labels or a pharmacist to
Practice article in this issue on page 28 also discusses assist you with understanding medications.
how to elicit this information.1 • Check with your doctor before accessing alternative
• Move away from your computer and look me in the eye. treatments.
• For the brief period of time we are together, make me • Do not assume that action is always better than
feel that I am your only patient and my health is your no action; based on your values and preferences, it
only priority. might be better for you not to have a screening test or
• Take a few minutes to explore my values and prefer- undergo a particular treatment. Discuss this fully with
ences before we develop a plan of action. your doctor before making a decision.
• If I am a candidate for a screening test, help me • Take a proactive approach; be willing to accept and
understand pros and cons, and benefits and harms, implement screening and preventive strategies to
then give me time to process the information before I avoid more serious health issues. Be open to making
decide. Allow me to “sleep on” decisions, even those lifestyle changes to prevent or improve health issues.
that might seem straightforward to you.
• Hone the skills needed to “read people”—to determine who Conclusion
is the information seeker, who is the emotional responder, Asking not only what a patient wants or needs but
and who is too worried to hear anything you are saying. also what they value results in more meaningful deci-
• Be patient when I am confused, unaware of preven- sion making for both preventive and responsive health
tive health screening, or anxious about unfamiliar care. By blending current information and appropriate
symptoms or asymptomatic presentations. choices, there is an increased commitment by physi-
• Help me understand the terminology, especially the cians and patients to preventive care, which leads to
acronyms and short forms that are familiar to you but healthy Canadians. We are so fortunate to live in a time
like a foreign language to me. when there is the willingness and expertise to make
• Give me the most common and important side effects this happen.
of a test, treatment, or medication, but do not over- Mrs Telfer is a retired educator in Chatham-Kent, Ont, and is the volunteer author of a monthly
newspaper column called “Concerning Cancer” for the Canadian Cancer Society.
whelm me with all possible negative outcomes.
Competing interests
• Give me “take-aways”—printed information, summa- Mrs Telfer was reimbursed for her time and efforts by the Canadian Task Force on Preventive Health Care.

ries, or references to reputable sources of information The opinions expressed in commentaries are those of the authors. Publication does not imply
endorsement by the College of Family Physicians of Canada.
(such as those created by the Canadian Task Force
Reference
on Preventive Health Care) so I can come to the next 1. Lang E, Bell NR, Dickinson JA, Grad R, Kasperavicius D, Moore AE, et al. Eliciting patient values
and preferences to inform shared decision making in preventive screening. Can Fam Physician
appointment more prepared. 2018;64:28-31 (Eng), e13-6 (Fr).
• Clarify the process of communicating screening or
testing results; reinforce that no news is good news. Cet article se trouve aussi en français à la page 13.

Vol 64: JANUARY | JANVIER 2018 | Canadian Family Physician | Le Médecin de famille canadien 11