In order of relevance
(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease are referred to as ALS/MND.
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
No shared decision-making
"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
Not being believed
"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
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.
Problems during procedures
Plan the meeting
Understand the problem
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
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
"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
Watch your body language
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
"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
Restate what you heard
Explain how you feel about the problem
Clarify what you would like to see happen
Write a letter
"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
"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
"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
"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.
The following are some suggestions for things that help with problem solving in medical situations and things that tend to make things worse.
Problems that can't be resolved
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
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
CURRENT SIGNIFICANT MEDICAL PROBLEM(S)
LIST OF SPECIAL NEEDS
GENERAL MEDICAL HISTORY
GENERAL PERSONAL INFORMATION
LIST OF TESTS
LIST OF PAST MEDICATIONS, ETC.
LIST OF THERAPIES
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