How can I get the Doctor or therapist we use now to do what we want?

Many people assume their doctor and family understand them. Here are two problems: Family Caregiver Alliances study found 57% of caregivers want information about what to expect as a disease progresses, 38% said they received it, 83% of doctors said they gave it.  Here are some suggestions:

• Take responsibility for asking what you want to know
• Write your questions down ahead of time, even send them to the doctor before the visit
• Take along a pad of paper to write the answers
• Take along another person to help you get the questions asked and to help remember the answers.
• Be specific about your function and discomforts, your desires and your resources (time, money, energy, caregivers)

Check lists for talking with your doctor (PDF)
Checklist for talking with your therapist (PDF)

Be a good historian.  Instead of telling the doctor or therapist that you hurt, clarify

• When did it start, what you think makes it better or worse
• When does it feel even a little better?  For how long?  How often?  Does it ever go away entirely?
• When does it get worse, how often, and for how long?  On a scale of 1-10 can you rate it?
• Can you describe it?  shooting, aching, pulling, tingling, etc?  (Different sensations have different meanings)
• What have you taken or done to treat it yourself?  Include all over the counter, prescription, herbs etc as well as positions that work and beliefs about what is happening.

Questions to ask before dealing with the health care and reimbursement system

1)  You can ask yourself these questions about your condition to help you clarify what else you want to know.
2)  You can ask someone else these questions if you don’t know what they know about their condition.  These are questions that can help start that conversation.
3)  You can use these questions to compare what you understand with what someone else understands about an illness or injury.  Again, these questions can help start the conversation.

• What do you know about this disease (or condition)?
• What did your doctor tell you? What do your family, friends or religious leaders tell you?
• How do you picture yourself in 10 years (1 month, 5 years)
• What are the long-term ramifications of this condition?
• How do your religious beliefs help you?
• What do you think about what you have heard others say?
• Can you define how you are doing in terms of what you can do and can’t do, not in terms of you medical condition?
• Knowing that we never know exactly what is going to happen,  What would you like to have happen? What do you NOT want to happen? What do you hope for that you can control? (see “Eight Stations of Life”, under Hope and Empowerment, and “Be Specific about Your Terms”, below)
• For more ideas on questions to ask go to Listening questions

Therapy In Your Home wants you to be able to advocate for yourself and your loved ones. We want you to have clear goals for yourself and for us. We can help you by clarifying your goals, clarifying what we or others are seeing that might be different than what you see. We can help you understand how what you feel impacts what you do, and teach you ways to respond to scary and frustrating situations that occur as a result of disuse, disability, age, change, etc. We can address the needs of your caregiver in the same way.

Five Wishes  (https://fivewishes.org/) is a website that helps you ask useful questions as you ponder your care going forward.  Can you discuss these questions with the people who matter to you, or who might be taking care of you?

• The person I want to make care decisions for me when I can’t
• The kind of Medical treatment I want or don’t want
• How comfortable I want to be
• How I want people to treat me
• What I want my loved ones to know

Be clear about what you tell your physician and the insurance company

• Speak up when your doctor offers you a procedure or a medication and talk about the benefits and burdens it may cause. Each physician specialty has a list of questions for making wise decisions:   http://www.choosingwisely.org/doctor-patient-lists/. Look at the specialty of the MD you are working with. You don’t want more medical care than you desire.
• Speak up when your health providers or insurance decline to assist you to reach a potential you think possible.  See How your prognosis impacts your insurance coverage.

Recognize that in the above two statements there are  balances and paradoxes of your goals and your diagnoses: know your own assets and limits, you support system, your history, your finances and aim for a balance of quality from all perspectives.

Know the Parameters of the Vital Signs that pertain to you and keep a history

(adapted from the Medicare OASIS Reporting Guidelines for therapists and nurses to document when they come to your home.  You can help by keeping tracking important changes yourself)

• • Oral temperature:  <95 degrees or >100 degrees

• • Pulse at rest:  <50 or >100  (know how to take your pulse, check it until you are familiar with it’s changes during different activities)

• • Blood Pressure:  <85 or >160 for top, and  <50 or >90 for  bottom

• • Breath rate:  <12 or >30

• • Oxygen Level:  <88

• • Weight:  an increase of 2 lbs or more in a day or 3-5 lbs in a week, a decrease of 2 lbs in a month

• • Pain:  >4/10 or if the person can’t communicate, watch for facial expression, movement of legs, activity level, degree of crying, and your ability to console them.  (See FLACC Scale for measuring pain in those who can’t communicate, including children.

• • Blood Glucose:  <60 or >200, and signs of jyperglycemia (increased thirst, frequent unination, increased hungr, blurred vision, fatigue, dry itchy skin) or signs of hypoglycemia (shakiness, dizziness, sweating, hunger, headache, difficulty paying attention or confusion, changes in vision, irritable)

• • Wounds:  Signs of infection (change in amount, color or odor of wound drainage, increase in pain at wound site, increased in redness/warmth at sound site, fever or chills

• • Falls:  report all witnessed and un-witnessed falls (see below about possible causes you can think of, to help your doctor or therapist)

• Changes in condition:
  • • change in color, thickness, odor or amount of sputum
  • • new or increased edema
  • • chest pain
  • • increase shortness of breath
  • • increased fatigue or weakness
  • • dry nagging cough or coughing at night or with meals, especially with liquids
  • • asymmetry of limbs or face
  • changes in confusion level and communication skills (understanding and expressing)

Be specific about what caused your fall

Non-Mechanical:  (for instance)

• Cardiovascular:
  • Blood pressure meds
  • Slow heart rate
  • Dehydrated
  • Low blood sugars
  • Anemia
  • Vasovegal response (maybe after after pushing at toilet or shower)
• Neurologic
  • Vertigo – room spinning, light headed
  • Diabetic neuropathy, sensation of imbalance
  • Seizure
  • Sleep meds
• UTI (urinary Tract Infection)
• Alcohol

Mechanical (for instance)

• tripped on rug
• fell against a wall and slid down (its still a fall)
• walker tipped over
• dog got in way
• slid off bed (its still a fall)

Clarify your understanding of depression and other factors that influence care (caregiver burden, fear, avoidance of pain medications….  Talk to our therapists for help)

Be sure to clarify when depression is a part of the health issues.  Help is available. Depression symptoms are underrecognized.

PHQ-9 Depression Screen

Be specific about your terms

Its easy to define for your doctor what you DO want in the way of treatment. Its harder to define what you don’t want. Help your doctor understand what you mean.

• “No tubes” does not define what the tubes are for or how long they might be used.
• “No heroic treatment” does not define what heroic means.
• “No extraordinary measures” can become outdated, what is extraordinary today may not be tomorrow.
• “Not a vegetable” is difficult to define, and needs clarification about the potential for coming out of it. Also, if one does come out, what degree of disability would you find acceptable?
• “I want to go home.” Does that mean go home alone? Go home if you can do everything you used to do? Or you just want to get out of the hospital
• “I want to walk.”: Does that mean with help? Would you use an assistive device? If you had less pain, better safety and could go further, would you use a wheel chair?

The above list, of the more frequently documented concepts on Advance Directives, does not specify the GOAL for the above wishes.  For instance, you might want to allow tubes if you had a condition that prohibited you from eating but you were otherwise healthy.

So, be clear about your GOALS of care, why you made the above statement.  To help you clarify, see concepts under Hope and Empowerment, especially regarding the Go Wish Cards.    (CodaAlliance.org and GoWish.org) .

And, be very sure that the person you designate to make these decisions understands why you want what you want.  Try the Proxy Quiz from Commission of Law and Aging for your family or physicians.