Caring for Loved Ones at Home

An Illustrated, Easy-to-Follow Guide to Short or Long-term Care 4th Edition.

11. Talking With Your Doctor and Other Caregivers

Understanding the Doctor and Other Professional Caregivers

There is a natural apprehension by many toward anything medical. In the past few years, however, there has been a heightened awareness that everyone benefits when the person and family work together with their professional caregivers. Open and honest communication relieves the person and family's anxiety, while the doctors and caregivers feel more job satisfaction and less personal stress.

Caregivers have stresses that everyone can help diminish by working together. For example, the stresses of many professional caregivers include:

Heavy workload (it isn't enough to be a health care provider these days; you must also be a business person, a politician and a bureaucrat).

Deciding how much patients should know about their illness (although most people prefer to know the truth about their illness, there are those who prefer that the doctor not tell them the complete truth).

The increasing administrative requirements of governments and insurance companies.

Little time to learn new treatments and methods even though some professionals (e.g., doctors) must study a certain number of hours per year to keep their license.

Little time for personal stress reduction.

Increasing numbers of lawsuits.

A decreased public respect for medical professionals in general.

Some eminent doctors have written about doctor-patient relationships. Sir William Osler, 19th century Canadian doctor, diagnostician and scholar believed that it is more important to know what type of patient has a disease rather than what type of disease a patient has. He gave his patients little medication but lots of optimism.

Norman Cousins in his book, The Anatomy of an Illness, describes a visit he had with Dr. Albert Schweitzer in Africa. Schweitzer explained his philosophy of medical practice. He believed that people carry their own doctor inside of them. They go to a doctor because they do not recognize their own strength. A doctor's greatest asset is their ability to bring out the doctor within each patient. By helping patients gain a sense of personal control over their lives, doctors can also have a professional satisfaction that they are making a positive difference in the lives of their patients.

Understanding People Who are Ill and Their Families

Quality total care looks at the physical, emotional, spiritual and information needs of the person who is ill and their family members caring for them. Studies show that people who are ill want many of the same things including:

To be pain free.

To be alert and aware of what is happening to them.

To have the companionship of their family and friends.

To be accepted as the person they have always been.
To maintain their individuality.

To not be a burden to their family and caregivers.

To have familiar things around them: photos, plants, music, flowers, favourite food, pets.

To be cared for with love and respect.

To have their family get the support they need to help the person staying at home.

To have enough information to make informed choices about their treatment and care.

People who are ill and their families must accept responsibility for encouraging improved communication with their professional caregivers because an uncooperative relationship affects the patient and family most directly. This is not always easy because some people have a real fear of anything medical. They may have an uncooperative caregiver or they may have family problems that prevent good communication.

Of course some communication problems between someone who is ill and their professional caregivers come about because the person has few family or friends to support them during discussions with professionals. They may have outlived their spouse or partner, their children may not live nearby or they may be isolated because of a lack of services for our growing number of elders. They can be quite overwhelmed with the well-meaning care of a diverse group of professionals with little support to make sense of their condition, their needs or their personal care at home. These people may fall through the cracks of our health care and home care programs. Extra diligence on the part of professionals within health care facilities and home care programs is necessary to help these people find more natural supports within their communities.

What Doctors Can Learn From You

There are many things doctors can learn from the person who is ill and from their families:

Facts about the person's condition (this seems obvious but some symptoms are not adequately addressed by the doctor because the person does not talk about new symptoms, there are time constraints or the doctor or person makes assumptions about the condition).

New treatments that you have read about in a popular magazine or seen on a television program that the doctor has not investigated. Sometimes, these treatments are not proven but discussing them can get everyone more involved in treatment decisions. That sense of control improves an ill person's self image and decreases their anxiety.

People who are ill are always present for every symptom, test, treatment and appointment over the months or years of treatment. They can offer vital feedback on their present treatments, feelings and fears and must never be ignored.

People who are ill must be encouraged by professional caregivers to express their needs and to help the caregivers determine further treatment.

Some Do's and Don'ts of Improved Communication

From the doctor and other caregivers' points of view there are proven techniques that people can use to improve the patient-caregiver relationship.

Some Do's

Some people will choose not to try the following suggestions and, in effect, choose not to communicate and cooperate. Whether we agree with their decisions or not, it is their decision and they must be respected unless they injure someone else.

Know their caregivers' names and help them remember theirs.
Communicate with them about their physical, emotional, spiritual and information needs.

Cooperate fully once a decision on treatment is mutually decided.

Write down the important questions to ask (usually in groups of three) and record the caregiver's answers or bring a loved one along and let them record the answers.

Respect the caregiver's time while expecting the same in return.

Ask specific questions rather than, "Why did this happen to me"?

Offer a time limit for discussion (e.g., 8 minutes) and stick to it. In this way you build up a trusting relationship with the caregivers and they know you respect their time.

Some Don'ts

Some don'ts include:

Don't ignore medical instructions after a mutual decision has been made.

Don't ask too many questions, over and over again. It is better to record the professional's answers.

Don't bring up questions about other family members and friends in hope of free medical advice.

Don't keep telephoning with questions to one caregiver that can be better answered by other experts such as a nurse, pharmacist or therapist.

Don't wait to communicate new pains or negative symptoms until they have become serious.

Don't forget to communicate emotional and spiritual needs rather than putting on a brave face.

Don't get a second medical opinion without first telling the principal doctor.

Don't follow other medical or alternative therapies without consulting the principal doctor because the different therapies may conflict. If your doctor disapproves and you still want to try alternative methods, get another doctor who is more comfortable working in this way.

Don't forget to treat the caregivers with respect or concern.

The Differences Between Family Physicians and Specialists

Your family physician is responsible for your initial care and diagnosis and for follow-up after treatment by specialists. Some are able to go to the hospital and speak on your behalf with their colleagues and others are not depending on the rules within your health care community.

Your specialist(s) are responsible for the diagnosis and treatment of specific illnesses or conditions. When you have more than one condition or illness, you will have several specialists who may, or may not, talk to each other about your care.

Specialists plan your treatment and family physicians help explain and monitor treatment and send you back to specialist(s) for further care, if necessary.

For both types of physicians you will have initial appointments of about 15-30 minutes and then follow-up appointments of about 5-6 minutes. This time is valuable so use it well. You need to write out your questions and concerns and have a family member or friend come with you to write down the answers during the appointment.

Some Tips When Dealing With Specialists

Bring a summary of your medical history with you to each appointment, especially what has happened in the last year.

Bring your drugs with you to every appointment so doctor can verify the drug and dosage and see what other physicians have prescribed since last you met.

Ask your specialist for either written material or references where you can get more answers to your concerns and questions. For example, if you have recently been diagnosed with diabetes, your specialist cannot explain everything about the condition in a short appointment but can provide you with written material, perhaps even a video or audiotape with common information you will need to know or refer you to a specific patient information clinic. Once you know more about your condition, you can discuss specific concerns not answered in the general information.

It may be hard to reach your specialist when you are in the middle of treatment. Here are some tips:

If you are in hospital, ask the charge nurse to contact your specialist for you or ask to speak to the physician whose name is on your wristband who is responsible for coordinating your care while you are in the hospital. You may also ask the charge nurse or specialist when they are usually at the hospital so that you can contact them at that time rather than when they have office hours.

If you are at home, ask the nurse/receptionist in the office to have the specialist call you. Many specialists do not mind talking to you once a day during a particularly difficult time for you but more than that is too difficult for them to manage. You should only call them when they are the only person who can help (versus talking with a nurse, home care case manager, social worker, pharmacist, physiotherapist, etc.)

Have only one family member act as the family's spokesperson so that the physician does not have to give the same answers to each family member. Ideally this person is flexible enough to be at the hospital when the physician has rounds and has some understanding of health care.

Arrange for a family meeting with the specialist (or specialists if more are involved in the care), responsible nurses and other professionals to deal with unanswered concerns and questions. The hospital social worker may coordinate such a meeting.

If you have concerns, write them out for the charge nurse or office nurse/receptionist so that the physician can prioritize their calls. You can imagine that many people want to speak with the specialist so they have to decide who gets called first. They often make their calls at the end of their office hours.

Also leave them the times of day when you are easiest to reach and the telephone number.

Some physicians will give out their e-mail address so questions can be answered by e-mail. This is particularly helpful for factual type questions like "When should I be taking these various drugs during the day and do I take them with food or not?"

It is not helpful to show up to an appointment with a large pile of research you have done at the library or on the Internet. Narrow down your questions and ideas to reasonably fit into the time you have. Many physicians subscribe to their own Internet sources for up-to-date medical information. Ask them to print off relevant sections for you.

Your specialist does not control the resources of the hospital so their operating room time and the tests that need to be done are not always under their control. The more senior the physician, the more control they have over scheduling. However, emergencies and unexpected equipment delays or repairs play a large part in who gets what treatment or test and when.

If your concerns are urgent or you have had difficulty getting hold of your physician, become more assertive and make reasonable demands with deadlines so that the physician understands your urgency. If you cannot be assertive yourself, then ask your family spokesperson to do so. It is a universal truth that people often respond to patients with the greatest need or the loudest demands (the 'squeaky wheel gets the grease'). If you are reasonable and assertive, you will have a better chance of having your concerns and needs met.

Resolving Communication Problems

When open communication does not seem possible, there are other options available. If the problem has become serious, bring in the community or hospital social worker or the hospital discharge planner or home care case manager to see if improvements can be made.

Other caregivers such as a cleric, nurse or psychologist may also be helpful.

When the communication cannot be improved, the person and family can do one or both of the following (although I recognize that during such an emotional time these suggestions will not be easy to follow):

Change specialists or doctors on the advice of another caregiver.

Change hospitals or the service you are using.

If there are no alternatives available where you live, ask a family member or friend to become an assertive advocate on your behalf to speak to the caregiver or the organization's president or executive director. The advocate must not stop until they are successful.

If it is the person or family that is uncooperative, the doctor might recommend a different doctor or hospital. She must legally continue care until her patient has found a new doctor.

Many communication problems are not always one person's fault. People have different personalities and for whatever reason, some people do not communicate well with each other. If both people recognize the problem and accept the situation, the caregiver can help find someone to replace him.

In the case of family members, a doctor may find it easier to speak to a single member of the family rather than the whole family. Recognizing that the person is the doctor's most important concern, the family can arrange to choose a member to act as spokesperson and minimize the time a doctor needs to spend with the whole family.

After all the studies have been read, the personal experiences related, and the advice given, the underlying principle of total care of the person who is ill or recovering remains co-operation between patient, family and caregiver. A mutual respect and understanding of each others' feelings and needs will result in a fuller life for the person who is ill and a personal satisfaction for the family members and caregivers that they have helped the patient to the best of their abilities.

Caring for Loved Ones at Home

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Copyright © 1996, 1999, 2002, 2006 Harry van Bommel

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