Should medical doctors advocate for patient support groups

Canadian Physicians are expected to develop skills in advocating for patients, both as individual and as groups as part of the CanMeds Roles initiative. Patient Support groups are becoming an important aspect of some people’s management plan. Some examples are Patients Like Me Web Tribes and StarBright World. For other examples see a previous blog on the topic.
Do you think it is fair to ask physicians to become familiar with resources like this or should it be the responsibility of organizations like the Canadian Cancer Association? What responsibility do patients have to inform doctors about groups they belong to?

Helping Medical Students Communicate with a Grieving Patient/Family

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A doctor recently asked me about an occurrence in his practice and I realized that most doctors receive no training on how grief can interfere with the doctor/patient relationship. Doctors need to understand how grief impacts on communication and what communication tools will help the patient/family move through their grief. The following is not meant to be a complete treatise on Grief but hopefully it will facilitate you, the medical educator thinking about what you need to prepare your students for. Most medical students received some awareness of the stages of grief as stated by Dr. Kübler-Ross, so we will begin there.

Denial


We know that upon first receiving bad news, patients and family members frequently enter a state of shock where they stop being able to hear or feel because their brains are functioning at a flight/fight/freeze stage. To admit to the pain is to admit to an ending. In some cases, people use alcohol or drugs to maintain the feeling of numbness which can be useful initially but doesn’t allow the person to move through the stages. Some people belief letting go of the pain means letting go of the old self/family member.
    Avoid saying:
  • I know how you feel
  • It’s part of God’s plan
  • They are in a better place

    Some suggestions at the initial meeting:
  • Offer coffee or tea to give people time to unfog
  • Sit silently until the person is ready to talk
  • If information needs to be conveyed at this point, bringing a third party such as a friend or as a last resort a nurse in to take notes. Remember the person is unlikely to remember details of what you say
  • A cycle of emotional pain avoidance can precipitate addiction and it may be worthwhile nonjudgementally mentioning the need to be careful about alcohol and drug use during this time.
  • Expect people to cling to hope.

Hope

All that ever sounded like judgments and criticism are just tragic, suicidal attempts at saying please …(meet my need) –Marshall Rosenberg

Although not a stage in Kubler-Ross, in my experience Hope goes hand in hand with denial. We are a culture that believes in miracles, popular literature is full of the power of prayer, angels and positive thinking. The patient and family will think “If it worked for a stranger it should work for me.” You will find this stage a paradox because on one hand, your medical training says X and you may feel the patient is challenging your knowledge. On the other hand, you wish there could be a miracle no matter how unlikely. Understanding that hope is a normal response and your competence isn’t really being questioned is important.

Anger


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Never put your but (t) into the face of an angry person –Marshall Rosenberg

If the miracle cure didn’t happen, the patient/family is overwhelmed with feelings of rage. Abuse of alcohol and drugs traps a person in feelings of anger. At this stage, they are looking for someone to blame. God isn’t available but medical personnel and family members sometimes are. Again it’s important for the resident to realize anger needs to be spoken and this is not the time for defense. At the heart of the anger is a person in profound pain. This is the time to listen with compassion. Compassionate listening deescalates violence and allows the thinking brain to come to the surface. Once it surfaces, the patient/family is ready to engage in any problem solving that is needed.

    Avoid saying:
  • You have so much to be thankful for
  • You should or You will
  • You have no right to be angry at me even if that is true, this statement will escalate anger.

    Some suggestions for communicating with an angry patient/family member:
  • Sit quietly and listen lowering your height appears less threatening
  • Say you are sorry they are angry/in pain (you aren’t admitting guilt, you are acknowledging their pain)
  • Ask “Have you thought about. . .?” “What can I help you with?” once they have settled down.

Finally help students/residents to identify their own support systems.

Resources


The Angry Patient
Breaking Bad News
Collusion in doctor-patient communication about imminent death: an ethnographic study
DEATH AND DYING in Light of Affect
Disclosing Adverse Events
Helping Patients, Families, Caregivers, and Physicians, in the Grieving Process

Identify Methods of Promoting Healthy Living and Disease Prevention

” Researchers surveyed 183 University of Michigan Health System doctors: 102 residents and fellows and 81 attending physicians. Most said they weren’t confident they could persuade patients to change their lifestyle habits. Only about one in 10 trainees and 17.3% of attending physicians were confident about counseling patients on diet and exercise.” Howe et all, 2010
There are three major locations that influence the methods chosen:
1. In the Office/Hospital
You control what information the patient receives
vs. Physician Time; Expense of purchasing or creating resources
2. Community Resources
Doesn’t require a lot of physician time
vs. May not have resource in your community
3. Online Resources
24 hr/7day access anywhere anonymous in many cases
vs. Physician needs to do some research about sites medical accuracy
Examples of In Office/Hospital Promotions
paper based handouts
•reading material in the waiting room such as medical comics for kids and aboriginal teens.
•a nurse or other healthcare provider that runs educational sessions once a week
•referral sources within the hospital such as a diabetic counseling service
•use of a whiteboard to highlight key points
•one-on-one discussions during visits.
What others can you think of?
Examples of Community Promotions
•access to patient support groups
•organizations such as Kinsmen, Arthritis Society, Saskatchewan Cancer Society, FASD Support Network, Lung Association
Aboriginal and immigrant specific programs
What responsibility do you have in helping patients connect to appropriate community groups?
Are their certain types of patients that are more likely to receive this type of support from you?
If you were to survey your community’s resources, where do you think the gaps might exist?
Examples of Online Promotions
This section contains more information than the other locations because residents tend to lack awareness about what is currently available and how physicians are currently using online sites.
“My blogs saves time in exam room (when patients read content). Education occurs during, after, before & within visit.” Seattle Mama Doc speaking at Swedish 100 conference.
” I think it will become malpractice to Not offer a social network prescription.” Roni Zeiger MD Chief Health Strategist at Google
“If somebody has no clue about possible uses of data, should they be custodians of it?” E-Patient Dave
“The online health-information environment is going mobile. 17% of cell phone users have used their phone to look up health or medical information and 9% have software applications or “apps” on their phones that help them track or manage their health.” PEW study
CBC reported “41 per cent of the Canadian adults polled said they turn to online sites centred around a specific disease, medical issue or health-related product. Nine per cent visit online patient communities such as chat rooms and support groups.What is perhaps most remarkable is that 67 per cent of the time they trust the information they’re getting, the survey suggests.”
1. Read Pilot Study of Providing Online Care in a Primary Care Setting
2. Take a look at the results of The Ferguson Report on The Most Useful Resource for 9 Dimensions of Medical Care–As Rated by the 191 Members of an Online Support Community
3. Look at the NNT site that might be useful for discussing evidence based risk issues.
4. The most accessed medical information sites in the US:
i. WebMD 15,700,000/mth
ii. NIH 10,800,000/mth
iii. Mayo Clinic 8,200,000/mth
What sites might be Canadian equivalents? How would you evaluate these sites? One method is to look for the Honour Code symbol. Look at the bottom of the most accessed sites in the US for the HonCode symbol. Why might it be missing from the NIH site? Check out this Canadian site.
5. Take a look at these recommended online patient support group sites including Facing Cancer Together. What type of patient might an online support group appeal to? What assumptions are you making based on age or other factors that might prevent you from recommending an online group?
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Hint
Dr. Dan Sands, MD, MPH, the Senior Medical Informatics Director at Cisco Systems has the following suggestions for working with Internet savvy patients:
1. Break the ice – “Have you ever looked for health information online?”
2. Learn from them. “Have you found anything useful?”
3. Assist your patients. “Why give an outdated paper? Why not give info on the web that’s being constantly updated?”
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Final Reflection
Based on what you have been reading in this section, what method of advocating for individual patients is missing in your practice? How can you use information from patients to build your “resource library”? How might you implement changes in your practice to improve your advocacy skills? What skills do you need to improve in order to be competent in Health Promotion? Have a conversation with two of your preceptors about how you might improve your advocacy skills with individual patients.

Identify Opportunities for Advocating for Individual Patients

Take a moment to reflect on the cartoon on this page. Words used to describe patients can tell you a lot about how patients are viewed in your clinic/hospital. As you compare the following words used to describe patients, consider how patient centered medicine might result in improved medical outcomes?
Hierarchical View
undemanding
difficult
non-compliant
whiny
challenging authority
Patient Centered View
well informed or afraid to ask or unsure what to ask
concerned, frightened or confused
lacking trust or didn’t understand or unable to comply
frightened
questioning
Take a moment and think about the times you have advocated for a patient. The circumstances probably fell within one of the following categories:
Family You want family members to start or stop doing X in order to improve the patient’s health
Physicians You want a patient seen by another doctor or you want test results/procedures expedited
Other Healthcare You want a patient on a waiting list, or to receive homecare/counseling, extra service
Outside Agency/Club You want the patient to receive housing, welfare, equipment, or special services
Political Your member of parliament might help expedite an issue for a patient or their family
All of these are examples of individual patient advocacy that occur everyday. Less obvious forms of advocacy are internal. In your next day of practice, observe 5 examples of how you advocate for your patients. What skills as a collaborator or communicator did you use? What skills do you need to develop further? What barriers might occur within yourself, such as fatigue, frustration or fear that prevented you being an advocate? How might you encourage yourself to change how you respond to one of these barriers?

Advocate Role Introduction

In The CanMEDS 2005 Physician Competency Framework developed by the Royal College of Physicians and Surgeons, Health Advocacy is described as:
Definition As Health Advocates, physicians responsibly use their expertise and influence to advance the health and well-being of individual patients, communities, and populations.
Description Physicians recognize their duty and ability to improve the overall health of their patients and the society they serve. Doctors identify advocacy activities as important for the individual patient, for populations of patients and for communities. Individual patients need physicians to assist them in navigating the healthcare system and accessing the appropriate health resources in a timely manner. Communities and societies need physicians’ special expertise to identify and collaboratively address broad health issues and the determinants of health. At this level, health advocacy involves efforts to change specific practices or policies on behalf of those served. Framed in this multi-level way, health advocacy is an essential and fundamental component of health promotion.
Health advocacy is appropriately expressed both by individual and collective actions of physicians in influencing public health and policy.”
Key Competencies
Physicians are able to:
1.respond to individual patient health needs and issues as part of patient care
2.respond to the health needs of the communities that they serve
3.identify the determinants of health of the population that they serve
4.promote the health of individuals, communities and populations.
Reflective Case
Dr. Smith comes into Mary Comna’s hospital room and tells her and her family that he is prescribing Drug X when she leaves the hospital. He goes on to say that he does not recommend Drug Y because of its side effects. The family can pick up the prescription when Mary is discharged. Two days later, the family goes to the nursing station and finds Dr. Smith left a prescription for Drug Y. When confronted with the discrepancy, they are told Dr. Smith had the wrong prescription pad with him and no … the nurses will not contact him about the discrepancy. One of the family members pulls out their IPhone checks out Drug Y and doesn’t like what they read. They don’t bother filling the prescription on the way home.
Reflection
Did the traditional medical hierarchy (Dr.>Nurse>Patient) impact the outcome for this patient?
What role does trust in the doctor’s decision making play in medical outcomes?
Does it make a difference in your thinking about the case if you knew the doctor had his office in the hospital?
As medical information becomes more available online, what impact will information access have on the doctor/patient relationship?
If you saw this patient after their release from hospital, would you think to check for compliance with the prescription given?
This case is meant to demonstrate how the lack of patient centered care, resulted in no one being available to advocate for the hearing of the patient’s concerns.