CONTENTS

In order of relevance

Introduction

My Study
My Regimen
My Story
My Theory
My Advice
My Diagnosis
My Opinions

Mental Attitude
Self Healing

Frequently Asked Questions
Useful Links

Antioxidants
Antiox Articles

OPCs
Vitamins
Minerals & Aminos
Medications 

Diet
Liver Function
Healthy Foods 

Stress
Inspiration
Therapies
Treatments
Theories

Articles
Mycoplasma
Lyme Disease
Organophosphates

Talking to Doctors
Diagnosing ALS
Self Assessment

Acknowledgements

Steven Shackel

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SOLVING PROBLEMS
WITH YOUR DOCTOR

(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease
are referred to as ALS/MND.


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All doctors are not created equal. I have had some bad experiences with doctors, ranging from life threatening misdiagnosis, indifference, unwillingness to communicate, botched surgical procedures, lying to cover mistakes, attempted intimidation and downright rudeness.

I have also been fortunate enough to find competent doctors that are professional, helpful, personable and highly skilled.

Through my experiences, good and bad, I came to realise that doctors are "human". They have many of the same emotions, hang-ups, problems, family and business concerns as the rest of us. They can be tired, overworked or pressured. Doctors even get sick.

Doctors are highly intelligent, well educated human beings. There are other equally intelligent, highly trained human beings in many non-medical professions.

So, ask yourself this: if you employed a specialist tradesman to complete a task and that person was rude, indifferent or, worst of all, completed work that adversely affected or even threatened your life (e.g. your brakes failed after a mechanic "fixed" them or you lost your life savings due to bad business practices of an expert advisor), how would you react? Given the option, you would employ another qualified professional and you would certainly expect compensation for negligent or unprofessional work.

In the last two decades I have "fired" several general practitioners and specialist and sought other professionals to provide the quality of service I feel is appropriate. My carefully chosen, skilled medical professionals deserve and receive my respect, consideration and frequently, my extreme gratitude.

You have every right to expect nothing less than "professional" service from your doctor. If you have made an effort to work positively with your doctor and you receive less than the type of service you would expect from any other professional you employ - find another doctor who will provide that service.

Above all remember: doctors are humans, not gods. After being diagnosed with ALS/MND you are likely to come into contact with a number of medical professionals. You are essentially employing them to provide expert service. Treat them with the respect and consideration due to any intelligent human being - and insist that they afford you the same courtesy.



Patients and doctors have different temperaments, life experiences and expectations. As in any relationship, some differences of opinion are almost inevitable. The following examines several common problems encountered in medical relationships.


Differences of opinion
Active patients occasionally disagree with their doctors, especially if they have to see them frequently due to a chronic or serious illness. Medical relationships are similar to any other interpersonal relationship: with frequent interaction, friction is sometimes unavoidable. It is usually far better to work through it than to give up.

No shared decision-making
You have a legal and ethical right to fully participate in your medical treatment. If you have spent time researching and studying your illness and treatment options, only to be told by your doctor that he is in charge of the decision-making, conflict is guaranteed, as happened here:

"I lost my first specialist by asking too many questions. From my reading, I thought I should have one type of treatment, she chose another. I thought she probably had a reason and wanted to know what it was. She told me that she couldn't give me a medical school course. She was very insulted and suggested I would probably be happier with another specialist.

I was devastated when this happened because I was not being hostile when I asked the questions. It actually worked out better for me because I found a specialist who was willing to talk and willingly answer my questions. I knew there would be extra waiting time with the new doctor because she took so long with every patient, but it was worth it. "

Not being given the full story
Doctors sometimes tell only part of the story. Some of the reasons for selective presentations are: saves time, prevents questions, sways patient to accept recommendations and protects patients from upsetting information. Regardless of the reason, a biased explanation is totally unacceptable. Withholding knowledge of all the facts deprives patients of information they need to make informed decisions.

Not being believed
As medicine increasingly inclines toward the bells and whistles of complex machinery, the human voice is sometimes ignored. Many patients complain that their doctors and nurses believe the machines, rather than them. This patient recounts a harrowing experience:

"I was in hospital and in great pain. The nurses were short-staffed and when I rang the bell for help, it took the nurse half an hour to come. I told her that I was in extreme pain but she checked the morphine machine and said that the right rate of morphine was being administered and that I was fine. I kept calling all night long and she kept saying I was fine. She finally called the pain team of three doctors. They couldn't find anything wrong either but I was still in agony.

By the morning, I was in so much pain that I could not move and could barely talk. An orderly came in to get me up to exercise and I said I couldn't move. He said, "Oh, come on, you can do it," and pulled me up. I started to scream. Luckily, my parents arrived at that moment and my father took over. The pain team came back and when they checked, they found the needle was disconnected and I had been receiving no medication."

Lack of sympathy
Some doctors treat patients as problems to fix rather than complex human beings with more than just medical needs. Most patients recognize that the doctor's expertise may not include emotional support but people need to feel cared for and heard in order to heal.

One thing patients and family really need is validation of their feelings. They often just need to know that others have experienced what they are experiencing and that it can be a difficult and upsetting. Many medical staff are unable to supply this type of support. It would not take long but a little reassurance goes a long way. Mention this to the medical staff and they will frequently do their best to help.

Excessive waiting
Doctors are busy people; so are patients but patients sometimes find themselves waiting months to get an appointment, then spending an hour in the waiting room and perhaps enduring weeks of worry while waiting for test results. Waiting heightens emotions such as fear or anger and may result in a frustrating visit. You may be able to arrange appointment times for regular visits or treatments that better suit your own busy schedule; the first appointment of the day for example. Sometimes a doctor's receptionist or nurse it is able to assess if the doctor is running late and how long the delay is likely to be. The time you would have spent in the waiting room can instead be spent working.

Billing problems
Keep good records of your office visits and tests. Errors will probably be easy to identify. Hospital errors are more common and sometimes harder to prove. Copy hospital charts and list the dates when the doctor makes a notation in them. If these visits do not match the bills, write a letter noting the discrepancies between his actual visits and his billed visits. Attach a copy of the pertinent pages from your chart and send a copy of the same letter to your insurance company. The bill should be adjusted.

Problems during procedures
Patients often aren't aware of their legal and moral right to stop a procedure or refuse treatment. In most cases, unless they are a danger to themselves or others, adults have the right to refuse medical care. If a procedure is not going well, you have the right to tell them to stop. If you are receiving substandard or unprofessional treatment you have a right to point this out and discuss your problems or reservations.

CONFLICT RESOLUTION
There are numerous problems that result in conflict between patients and physicians. The following methods will outline ways to identify and fix misunderstandings and disagreements with your medical caregivers. Patients share many stories of how they persevered until the problems were resolved and what they did if the problem simply couldn't be fixed.

Plan the meeting
Your problem will probably get worse, not better, if you explode at the doctor or staff when you are very angry. Usually, it is better to leave if you are very upset and wait for your emotions to cool before taking action. Planning a strategy may help resolve the problem. The following ideas on what to consider during your planning process may help.

Understand the problem
Think about and clarify the nature of the problem. Decide to whom you need to talk. You may need to talk with the billing supervisor for bill problems, the doctor about treatment disagreements or the nurse for rude behaviour. Get expert information. You can skip this if the problem is about your relationship, e.g., wanting the doctor to not interrupt you so often.

If the disagreement is of a technical nature, for instance, choosing between two treatment plans, arm yourself with expert opinions. Decide on a strategy for the meeting. Consider obstacles. Have a positive attitude and expect to succeed. Carry out the plan. Set deadlines and goals for yourself, then gather appropriate information and make the appointment.

Make an appointment to talk
Combining your conflict resolution talk with an examination may backfire. First, you may not have enough time to fully discuss the issue. You will also be at a bargaining disadvantage if you are lying on a gurney looking up at the doctor. If the doctor is not expecting the discussion, you may start off on the wrong foot.

Too often, patients irritate doctors by bringing up an unexpected subject late in an appointment, throwing the doctor's schedule off and making it less likely that he will hear your problem with compassion. It is common courtesy to forewarn the doctor that you have specific issues to discuss, so that he has time to think about and prepare for the discussion as well. One doctor remarks on the ability of some doctors to hear what patients are saying:

"Some doctors have such a strong ego that they can't hear a patient's constructive complaint. You have to be very comfortable with yourself to be a good doctor and there are a lot of doctors who are not. If they feel that they are being challenged, it affects their sense of self. Many of them can't be objective about the situation and really hear what's being said. Sometimes they become defensive or belligerent.

When you call for your appointment, tell the receptionist that you need to talk to the doctor and it may take a while. This should ensure that you are given more than a ten-minute slot for your discussion. If the doctor knows she has time for a discussion, she might be less likely to interrupt or rush you. Knowing you have sufficient time may help you relax as well."

Get an advocate
If you feel intimidated or overwhelmed, it may help to have an advocate at your side during your appointment with the doctor. Even if you feel strong, another person to take notes or listen to explanations can help you keep focused on questions you're asking. If you feel intimidated, an advocate may help equalize the power equation with your doctor. One advocate recounts:

"An elderly client had a female surgeon who treated her like she was senile. The 80 years old patient is disabled but a mentally sharp, educated and sophisticated woman. The surgeon kept treating her like a child. She attempted to ask questions and discuss treatment options with the physician but the physician would have none of it. We had spent time with the patient discussing her treatment options and speaking with the physician could provide necessary data. Ultimately, one of the patient's friends went with her to an appointment. The friend just sat in the corner, listened and took notes. The physician treated the patient completely differently when someone else was present.

Send paperwork early
If you need to strengthen your position with documentation, fax or deliver it several days before the appointment. You may, for instance, be discussing a difference of opinion on your treatment plan. If you have researched the illness you probably have recent articles or treatment guidelines to share with the doctor. If he has time to read, think about and verify the information (perhaps even research rebuttal papers), you will more than likely have a fruitful discussion. It isn't fair to try to discuss articles that the doctor has not had a chance to read. It may frustrate him and be a waste of time for both of you.

Watch your body language
A large amount of what you communicate during a discussion is done nonverbally by body position, eye contact and distance between you and your doctor. Give some thought to how to use body language to your advantage.

For instance, don't try to discuss something important if you are lying down and the doctor is standing at your bedside. If you are confined to a hospital bed, crank up the head and ask the doctor to sit down so you are looking eye-to-eye. Similarly, don't try to talk over something important if you are in an examining room sitting on a table in a short gown. Make arrangements to talk with your clothes on, preferably in the doctor's office. Practice your tone of voice before the meeting. Strive to sound like a colleague, neither adversarial nor submissive.

State the problem
A clear description of the problem in a non-accusatory voice sets the stage for resolution. Use concrete terms to describe the problem and try to limit your discussion to one problem per meeting. A long list of topics will probably create more conflict. In the following case, a businessman made his point to the hospital staff in firm, clear and pleasant terms.

"I was spending four hours a day between 9 and 5 at the hospital attached to a bag. Transfusions can take up many hours of work time. I explained that I needed to get transfusions after work or lose my job. I asked to get my transfusions after 5:30 P.M. so that I could stop losing all of my vacation and sick time. When I requested this they had no valid objections except that it had never been done before. I was warm and pleasant at all times but very insistent that they find a way. We should help the medical profession learn good customer service skills. They will never know if we don't speak out."

It helps to be concise
You might write out or outline what you plan to say and practice what you will say before your visit. When talking to your doctor, make your description of the problem short and to the point. The longer you talk the more likely it is that you will be interrupted. If you are interrupted, ask politely if you may finish your thought and say you will be brief because you are interested in hearing the doctor's ideas.

Listen
After you have stated the problem and what you would like to see happen, stop. It is your turn to listen without interrupting. Make eye contact and lean forward to indicate your interest. Avoid body language that indicates a closed mind, such as crossed arms and legs, turning away, or moving about.

Restate what you heard
After the doctor stops talking, restate briefly what you heard. For example, if you told the doctor that you wanted to change medications because of unexpected side effects, and he explained alternative drugs that you could try, respond, "I hear you say that x, y, and z drugs are all possible replacements. Which would you recommend and why?" If the doctor gives a long reply that says there are no alternatives to treat your problem, you could say, "Are you saying that in your experience there are no other methods to treat my problem?" Then listen for the answer.

Explain how you feel about the problem
One excellent way to prevent more confrontation is to use "I" messages. If you state the problem in terms of how you are feeling, it is less likely to sound blaming and more likely to be heard. For instance, you could say, "When you told me the diagnosis and then turned and walked out of the room, I felt terrified and abandoned. I would have felt much better if you had expressed concern or had held my hand." This kind of description is easier to hear rather than a blaming one like, "You treated me like a lump of meat rather than a person."

Clarify what you would like to see happen
After you describe the problem, consider offering a potential solution. This lifts you out of the "complainer" category and into a partnership attempting to work out a constructive solution. Complaining frequently ends in circular discussions of accusation and response, rather than working toward a solution. Setting a clear goal will more likely result in you getting what you want.

Negotiate
Once you and the doctor have each clearly stated your positions, talk over the options. You have a right to vigorously negotiate for what you want.

Write a letter
You may be more comfortable writing than talking face-to-face. If this is the case, try to use the same positive tone in your letter. One woman encountered numerous difficulties during her husband's long illness. She explains her approach:

"I've written some truly nasty letters. I wait a day or two, reread them then I tear them up and write a more polite, brief note detailing the problem. I believe the nasty notes should never be seen by anyone but myself but writing them really helps clear out my system! I also make it a point to write thank-you letters to doctors and health care people who have been particularly helpful."

Agree on a plan
Your negotiations should end in agreeing upon a plan of action. Make sure that you are comfortable with the solution. This parent's agreement satisfied both the parent and the doctor:

"We had a problem with our doctor's office not calling the specialist's office with the results of my son's blood work. This caused worry and a delay in changing his medications. I told the doctor's staff that I knew how busy they were and I hated to keep calling them to get the results.

I asked if it was possible for them to give the lab authorization to call me with the results. They thought it was a great idea. The lab would fax the doctor the results but call me. I would call the specialist and find out if I needed to change the meds. The specialist would fax the med dose change to our doctor's office. It was a win/win situation: the doctor's office wasn't interrupted, they got copies of everything in writing and I was worry free."

Agree to disagree
Assertive patients sometimes find that, after a thorough discussion, they simply disagree with their doctor. If you've calmly explained your decision, listened to her side and still have a different opinion, it's time to agree to disagree. In rare cases, if your doctor feels that your decision is life threatening or unconscionable for some other reason, she might remove herself from your case. Usually, however, you will just move on. Here's how one patient handled the issue:

"Our doctor and I rarely disagree but when it happens it is resolved in a healthy and graceful way. One instance was over occupational therapy. I thought a particular type of therapy would be beneficial. The doctor didn't. I brought him in bibliographies of articles from the last two decades. He wasn't impressed.

We discussed it and ended up just disagreeing. He didn't feel comfortable writing a referral for a therapy he thought was not helpful, so I didn't ask him to. I just told him it was refreshing to hear his point of view and I wished I could change his mind. Then we both laughed. I worked with my insurance company and got the therapy covered. I still have a great relationship with the doctor.

Whatever you decide, do not leave the office dissatisfied. If you can't reach agreement, tell your doctor what you are going to do. For instance, you may say, "I'll have to think about what you've said and decide what to do later." Or you could say, "I feel that this is an important issue. Could we make another appointment to talk some more?" You could end the discussion by stating the obvious: "I think we're beating a dead horse. We just disagree. I respect your position, and I hope you do mine. Here's what I've decided to do."

Problems in the hospital
You sometimes don't have time for deliberation when a problem arises in the hospital. Your best bets are to ask a nurse for help, talk to the social worker or chaplain, talk to the hospital's patient advocate or get a family member to try to resolve the dispute. It's hard to talk tough when you're flat on your back. Here is advice from a nurse:

"If someone is having trouble in the hospital, I advise them to find a talkative and friendly nurse and ask for advice. There is no better source of information. If I think a resident is in over his head, I try to talk him into calling the attending doctor. If he doesn't, I call the doctor myself. Sometimes the residents get mad but the patients get the experienced help they need."

If the problem is not resolved by talking with the doctor, nurse, or social worker, find out about the hospital's process for addressing ethical issues. Hospitals are required by the Joint Commission on Accreditation of Healthcare Organizations in the USA (and similar governing bodies in most other countries) to have a method of dealing with ethical problems.

Many hospitals and even some health plans have ethics committees. How you access this committee varies from hospital to hospital. One doctor describes the system at the teaching hospital where she works:

"In our hospital, a patient can pick up the phone, call the hospital operator and ask to speak to whoever is on call for the ethics committee. We also put a brochure in the admissions material that describes the committee and what it does. It serves anybody - patient, doctor, nurse, social worker. It is a neutral entity. Usually, issues come forward from the patient representative, social worker, nurse or chaplain.

Any issues are addressed, such as organ donation, end-of-life issues (turning off ventilators, hydration, feeding) and balancing economic issues with patient care. Another area is resolving ethnic/religious issues of the patients that are not understood or respected by members of the care team. They basically mediate between people with problems.

Mending fences
If you feel that some damage was done to your relationship in the discussions, you might consider mending fences. This doesn't mean capitulation; rather, it means putting the dispute in context. For instance, if you have had a satisfying and long relationship with your doctor, you might want to write a letter to tell him the things you appreciate about his care. Or you may need to simply clear the air.

The following are some suggestions for things that help with problem solving in medical situations and things that tend to make things worse.

 Do

  Don't

 Deal with one problem at a time

 Bring in a long list of problems

 Speak respectfully

 Speak critically

 Focus on your goal

 Digress

 Offer clear information

 Challenge what the doctor knows

 Ask questions to clarify

 Make assumptions

 Anticipate disruptions

 Allow intimidation or interruptions

Problems that can't be resolved
Some disputes with doctors cannot be resolved and some relationships break beyond repair. If you find yourself in one of these situations, finding a new doctor may be the best solution. More serious problems such as impaired physicians, serious medical errors, violations of confidentiality, etc. require outside help.

Most of this information was adapted from Working with Your Doctor: Getting the Healthcare You Deserve, by Nancy Keene, © 2001 by Patient-Centred Guides.


HELP YOUR DOCTOR TO HELP YOU

An extremely useful tool for your doctor, his/her office staff, hospitals, healthcare professionals and ultimately yourself is a single sheet summary of your medical history.

Whenever I see a new doctor or specialist I provide them with a version of the document below and they invariably exclaim how helpful it is and assume it was something forwarded by my family doctor's office.

I invented this for my own convenience initially but realised how helpful it was for all medical practitioners that require a general medical history, especially from somebody like me with multiple and complex medical problems.

Here is an example of the document I provide for all practitioners, clinics and hospitals:

RELEVANT MEDICAL HISTORY

Full name, title, qualifications, etc
Date of birth, Marital status, Number of children.
Full contact details: Full home and mailing address
Phone number(s), email address, fax number

In Case of Emergency: Name and contact details of person(s) to contact

Organ Donor: Mention if you are a registered organ donor.

Full names and full contact details of Family Doctor and any relevant specialist doctors that are or have treated you at some stage

LIST OF CURRENT PRESCRIPTION MEDICATIONS
Name of each drug, frequency taken and mg per dose. (Ensure this list is complete, current and accurate. Update it frequently)

CURRENT SIGNIFICANT MEDICAL PROBLEM(S)
Full description of diagnosed illnesses including dates diagnosed and if possible by whom and at what institute.

LIST OF SPECIAL NEEDS
If you need an interpreter, need assistance reading or filling out forms, need assistance toileting, fitting a prosthesis, etc. Whatever is relevant in your case.

GENERAL MEDICAL HISTORY
Blood Type
Significant surgical procedures
: dates and places where performed if relevant. Chronic illnesses: such as diabetes, liver, lung, kidney dysfunction, etc.
List of major illnesses throughout lifetime: particularly if they were chronic or could have been life threatening or have a lasting influence on your general health. Fractures or significant injuries... (eg. Spinal injuries could require special support if you are anaesthetized for surgery).
Allergies:
especially known drug allergies, food allergies, hayfever, etc.

GENERAL PERSONAL INFORMATION
Do you drink alcohol, smoke
- if so, how much, etc...? If you used to drink or smoke, when did you quit?
Details of education or special skills.
List of sports, hobbies, etc. to provide an indication of lifestyle and interests.
I
f you are disabled, list activities you would normally do prior to disability (or in spite of disability if possible).
List of awards or achievements.
Website address if it has pertinent information about you, your family, lifestyle, etc.

Use anything that emphasises that you are a thinking, feeling human being rather than merely "a disease with meat attached".


SECTION 2

CURRENT SYMPTOMS, ETC.
This should include a description of your symptoms from your point of view and in your own words - e.g. My spinal injury causes intense, disabling pain in left leg when sitting for long periods. eg. 2: Muscle weakness in my left arm prevents me from doing... e.g. 3 Diabetes requires that I eat every x hours.

LIST OF TESTS
Full list of tests, medical examinations and procedures undertaken to diagnose your current illness(es). Dates and names of institutions, doctors, etc. may be useful here, especially if the reader needs to contact them to discuss test results.

LIST OF PAST MEDICATIONS, ETC.
Names of medications that were tried but did not help or had to be discontinued (give reason for discontinuation if relevant). Mention know drug intolerances. If applicable, mention supplementary vitamins, herbal remedies, etc. as these can sometimes interact with prescribed medications.

LIST OF THERAPIES
This can be a list of current therapies that are helping and/or a list of therapies that were tried but did not help or had to be discontinued. Provide reasons for discontinuation if relevant. You may wish to list all the things you have tried to regain good health even if they proved of no benefit or had to be discontinued.

PAGE 2

You may need to attach a second page describing in detail any aspect of your health, lifestyle or other factors that could be relevant to a practitioner you have not met before. Often a second page is unnecessary but sometimes a paragraph or two may help fill out details of your medical and personal history that could prove useful.

Try to be brief but provide as much relevant detail as possible. The practitioner may find information here that is not apparent from just reading a list of medications, past illnesses, etc.

Select, copy, paste then save a copy of the above as a template for detailing your medical and personal information for use in case of emergencies.

Fill in your own details then update it frequently and remove obsolete information. Always update information and print a new copy prior to seeing a new doctor or other practitioner, paying close attention to changes in medications, dosages, etc.

This "information at a glance" can be attached to the front of your medical file for future reference (supply an updated copy if you are visiting a practitioner you haven't seen for a while).

It is helpful to include this information with a letter of referral from your doctor to a specialist. It is also useful to keep a printed copy of this information at your bedside if you are admitted to hospital.



Alphabetical Contents List
| Introduction | Acknowledgements | Antioxidants |
|
Antioxidant Articles | Articles | Diagnosing ALS | Diet | F A Q |
| Healthy Foods | Inspiration | Liver Function | Lyme Disease |
|
Medications | Mental Attitude | Minerals & Aminos | My Advice |
|
Mycoplasma | My Diagnosis | My Opinion | My Regimen | My Story |
| My Study | My Theory | OPCs | Organophosphates | Self Assessment |
|
Self Healing | Stress | Talking to Doctors | Theories | Therapies |
|
Treatments | Steven Shackel | Useful Links | Vitamins |
|
Home Page |