Negotiating the Healthcare System
Table of Contents
Healthcare today is dramatically different from the healthcare system years ago. Today, we have a highly technical system of care with medical diagnostic and treatment advances that have provided great benefit to extend life and improve quality of life. However, this system has financial costs and often requires multiple physician and non-physician healthcare specialists to provide the care. Health insurance, managed care, and Medicare and Medicaid financing have each played a part in directing the healthcare delivery system. One result of this has been an often fragmented and confusing system of care.
A caregiver needs to be able to communicate effectively with the healthcare professionals who provide care to theolder adult. You, as the caregiver, are part of the caregiving “team,” and your role is vital in obtaining the best medical care for them. As the person who provides hands-on care, you understand better their medical history, symptoms, and concerns. In fact, you may have to learn to read non-verbal cues in order to provide needed information to the healthcare provider if the older adult is no longer able to communicate verbally.
- Know and respect your loved one’s wishes regarding healthcare treatment, procedures, and end-of-life issues.
- Ask your loved one to designate someone who will make healthcare decisions for him/her in the event he/ she is no longer able to make such decisions. This can be done through an advance directive such as a Power of Attorney for Health Care (now called Appointment of a Health Care Agent) and a Living Will (now called an Advance Care Plan). (See Financial & Legal Issues Chapter.)
- If you are caring for an older adult, consider using, as the primary care provider, a doctor who is board certified in geriatrics.
If the older adult is able to actively participate in the healthcare process, your role may be more of a partner and support person in planning and preparing for appointments with healthcare professionals. You may also need to assume the role of an advocate to help him/her negotiate the healthcare system.
1. Planning Ahead is an important and essential part of getting the most from a medical appointment.
- Try to schedule the appointment for the older adult's best time of day. You might also ask office staff what time of day or day of the week the office is least crowded.
- If you have a number of concerns to discuss which may require more time than allotted for a typical appointment, let the office staff know in advance that you may need some additional time with the doctor.
- If the patient is memory-impaired and/or likely to be resistant or anxious about going to the doctor, wait until the day of the visit to inform him/her of the appointment and be positive and matter-of‑fact.
- You may want to bring something for the patient to eat and drink, as well as an enjoyable activity, to help pass the time in the waiting room.
- Propose that a family member or friend go along to the appointment. In addition to providing moral support, another person may help to relay significant information to the healthcare provider or ask an important question that might otherwise be forgotten. If test results or other detailed or upsetting information may be given, another set of ears is helpful in remembering and understanding what has been told.
2. Being Prepared is the most effective approach to getting the most from an appointment with a doctor or other health care professional. It also gives the medical staff all the information necessary to make good healthcare decisions.
- Write down what you want to discuss with the doctor or other health professional. Put your concerns in order of priority, so you will be sure to talk about the most important ones first, in case you don’t have time for all of them.
- Make a list of any important changes and/or new symptoms that have appeared since the last appointment, including any major changes or stressors in the patient’s life, such as the death of a family member or a new living situation.
- Briefly summarize general health information, including weight (loss or gain), appetite (increase or decrease), sleep patterns, restlessness or lethargy, and mood (depressed, withdrawn, anxious, upbeat).
- Take with you, either all of the medications the patient is currently on, or a list of the medications, dosages, and frequencies. Include vitamins, over the counter medications, nutritional supplements, and herbal medicines.
- Arrive early enough to fill out the office paperwork before the scheduled appointment time.
3. Taking Charge of the appointment establishes your role as a vital member of the healthcare team. Identify yourself and the patient if needed, make eye contact, and let the medical staff person (nurse, doctor, physican's assistant, physical therapist, etc.) know that you are prepared to provide whatever information is needed, particularly if the patient is unable or unlikely to do so.
- Be honest and factual in answering questions. Telling a doctor what you think he/she wants to hear will not help you or the patient obtain good medical care. If you need to share information that might be upsetting to the patient, ask ahead of time to speak to the doctor privately or provide that information prior to the appointment.
- Stick to the point by focusing on the information you need to share and the concerns you want to address. Be brief but specific and descriptive.
- Ask questions and ask for clarification, for more information, or about treatment options. Make notes for later reference or use a tape recorder (with the doctor’s permission).
- Repeating back to the doctor what you have heard is a good way to insure that you understand clearly what the doctor is saying.
- Share your point of view. What the doctor or other health professional suggests as a plan of care may not be what works best for you as the caregiver. State your concerns and ask about other options.
- Whenever possible, have the doctor or the office staff provide written advice and instructions and/or referrals to additional sources of information. If you are expecting test results, ask how and when you can expect to have the results relayed to you.
- Discuss a contingency plan. Ask the doctor what to expect and what to do if there is a problem, particularly outside of office hours. It is better to plan now than to try to figure it out when you are frantic at 3 a.m.
- Talk to other members of the healthcare team in addition to the doctor. Doctors may not be able to answer every question. For example, pharmacists are often the best source of information about possible drug side effects and drug interactions.
- Take the necessary steps to ensure that medications and treatments are being given as prescribed—note dosage and frequency and monitor for potential side effects.
- Notify the doctor if the medication or treatment is not effective within the expected time frame or if there are side effects that concern you.
- Update the healthcare file following each doctor’s visit to reflect any changes in the plan of care, new or discontinued medications, etc.
- Do your own research so that you and your loved one are informed and effective advocates. Bookstores, libraries, specific disease-related organizations (such as American Cancer Society or Alzheimer’s Association), and the Internet offer a wealth of educational materials.
From time of admission to discharge, the odler adult's condition and care needs are being monitored to make sure that the hospital is the only location of care that the treatment can be safely administered. As soon as care can be provided at another level, such as a skilled nursing home or at home, there will be discussion about discharging your family member from the hospital.
- The hospital staff should provide clear instructions prior to discharge regarding the needs of the patient who is returning home. These may be provided by the nurse, the rehab therapist, the certified diabetes educator, the respiratory therapist, and/or others as appropriate. Ask for further clarification if you do not completely understand the instructions for care after discharge.
- Some older adults get disoriented in the hospital. This may also be especially true if they are going from the hospital to a new facility or a relative’s home. Extra patience and compassion will help ease the transition.
- Every hospital is required to have someone that will assist you with planning for care after discharge. This person may be a nurse case manager or a social worker. The “discharge planner” is available to help you review your options for care and to help you with arranging for any special needs of your loved one such as home medical equipment or home healthcare. If you need assistance with planning, ask for the “discharge planner”, nurse case manager or social worker.
- If you think your family member is being discharged too soon, Medicare has a procedure to address this issue.
- Every hospital has a process for examining ethical issues. Often this is an ethics committee. Patients and/or their families have a right to access this committee or process. You can ask for an ethics consult if there is a dilemma or disagreement about the course of treatment. You may also request this if you need help with serious healthcare decisions that often have to be made at the end of life.
Home Health Care
To receive home health through Medicare, an individual has to be “homebound” and require either skilled nursing or rehabilitation services. A physician has to order these services. When you are receiving home health services, a primary case manager should be available to talk with you, with the older adult's permission. Also, you can request that the physician order a social work visit if you need assistance with long-term care planning and decision making.
Nursing Facility / Assisted Living Facility
As a family member your caregiving does not end with nursing home placement or placement in an assisted living facility; you are partners with the facility in providing care to the older adult. Helping the staff to know and understand them can enhance the quality of care received.
- Write down information about your elder’s care that will help the staff. If the older adult has difficulty communicating preferences and needs, write these down in a notebook that can be shared with the staff. This is particularly helpful if your family member has multiple caregivers.
- Develop positive relationships with the direct caregiver staff. Express appreciation to them when they do a good job.
- Each nursing facility has regularly scheduled team meetings to review the older adult’s “care plan.” The older adult and you as a family member should be invited to participate in this meeting. This is an opportunity for you to assist the team in the care of the older adult and to discuss changes in their health and well being. Assisted Living Facilities may not have regularly scheduled care plan meetings. However, you can request a meeting with key staff to discuss their needs.
- If you have problems that you are not able to resolve by talking with direct care staff, supervisory staff, and/or administrative staff at the nursing home, you may contact your nursing home ombudsman for assistance. An ombudsman works to resolve problems or complaints involving long-term care residents through investigation, mediation and counseling.
Hospice is a program for persons with life-limiting illness when the life expectancy is six months or less. Persons can be in hospice longer than six months if there is a continuing decline and if the hospice determines that continued eligibility is met. Hospice care is physician-directed and provided by a multi-disciplinary team. The focus is on symptom management and not on cure of the disease. Medicare has a special insurance benefit for hospice. If your family member is in hospice, your needs as family caregiver are important to the hospice team. Not only does hospice attend to the multi-dimensional needs of the patient (physical, emotional, social, spiritual), but they also address the needs of the caregiving family. Open communication about your needs and concerns will assist the hospice team in caring for you and the older adult. Hospice will remain in contact with you after the death of your realive and will offer bereavement services as well.
**See End of Life Care chapter for more information about hospice.
The average older adult takes four and a half prescriptions and two over-the-counter medications daily. Managing mulitple medications can be, at times, a daunting task. Some helpful hints to effectively manage medications for the older adult:
- Bring all medications (both prescribed and over-the-counter) to all doctor’s visits. If this is not feasible, bring a comprehensive list of all medications taken. It is important that your healthcare provider knows of all medications that the older adult is taking.
- Check first. Never give an over-the-counter medication (including herbs and dietary supplements) without first checking with the patient’s healthcare professional. Some of these medications may interact with other medications and could potentially cause harmful effects.
- Compliance products. Use a medication compliance product such as pillboxes, pill timers, or specialized pill packages. Talk with your pharmacist about this.
- Schedule. Ask the healthcare provider to write a schedule of when medications should be taken throughout the day and whether they should be taken with food or on an empty stomach.
- Difficulty swallowing. If the older adult has difficulty swallowing medications, talk with the healthcare professional about an alternative form of the medication. Never crush medications without first talking to a healthcare professional.
- Side effects. If you suspect that a medication is causing adverse effects in the older adult, contact the healthcare provider before stopping this medication. Be observant for any changes that may occur when they first start taking a medication.
- Talk with your pharmacist. Consult your pharmacist if you have any questions about the older adult's medications. It is especially important to ask what food or drink may interact with their medications. Pharmacists’ extensive knowledge about medications can be of great benefit to you.
- Vision problems. If the older adult has difficulty reading pill bottles, it might be helpful to color-code pill bottles. For example, they may know to take one pill from the yellow bottle two times a day.
- Take all medications as prescribed. It is imperative not to skip doses or double up if a dose is missed, as this could potentially cause adverse effects.
- Do not share medications with others. Medications can behave differently in older adults than they do in younger adults.
- Use the same pharmacy for all medications. This efficiency will ensure that your pharmacy has a complete record of medications, including changes in dosages of medications; they can be sure no interacting medications have been prescribed by different healthcare providers.
Over the Counter Medications
Many older adults take over-the-counter (OTC) medications. It is very important to notify your healthcare provider and pharmacist of any OTC medications taken, as some may interfere with prescribed medications or with different health problems. Listed below are some common OTC medications with tips about their potential side effects and limitations in older individuals. If you or patient have any concern about medications, it is best to consult your pharmacist or healthcare provider immediately to discuss these concerns.
- Acetaminophen (Tylenol): Older individuls should take no more than four grams (4000 mg) of Tylenol a day.
- Asprins and NSAIDS: The most frequent side effect of aspirin and NSAIDs (nonsteroidal anti-inflammatories) is gastrointestinal (GI) upset. Examples of over the counter NSAIDs are ibuprofen (Motrin or Advil) and naproxen (Naprosyn). Sometimes the prolonged use of NSAIDs can cause GI bleeding, more commonly in older adults. This can also occur when
NSAIDs are taken in high dosages or in those who have more than one alcoholic beverage per week while taking NSAIDs. These medications need to be used sparingly by those with kidney problems as well as those with high blood pressure.
- Antihistamines: are medications that are used to treat allergy symptoms such as itching, nasal irritation, sneezing, and mucus production. They are also used at night to help treat insomnia. Three common OTC antihistamines are:
Brompheniramine: medicine in Dimetapp Allergy
Diphenhydramine: medicine in Benadryl and Tylenol PM
Chlorpheniramine: medicine in Chlor-Trimeton Allergy
Antihistamines can cause sedation or drowsiness and therefore can significantly impair a person’s ability to drive and to increase an individual’s risk of falling. These medications can also cause urinary retention (lack of an ability to urinate), constipation, increased intraocular presure (pressure inside the eye), confusion, disorientation and agitation. The combination of alcohol and antihistamines can cause increased drowsiness.
- Decongestants: Pseudoephedrine: medicine in Sudafed Phenylephrine: medicine in Sudafed PE
are similar to adrenaline, and they cause blood vessels to constrict; therefore, increase blood pressure or raise blood sugar levels. Pseudoephedrine can also cause nervousness and heart palpitations. It is known to interact with many prescription medications, including beta-blockers, antidepressants, and insulin. Older individuals who have high blood pressure, glaucoma, or diabetes should never take an OTC decongestant without first checking with their healthcare provider or pharmacist. Individuals taking certain types of antidepressant medications or medications for a seizure disorder should also avoid taking OTC decongestants.
- Cough medicines
Cough medicines are grouped into two categories: expectorants and antitussives. Expectorants thin the mucus, making it easier to clear it from the airway. Guaifenesin, one of the medicines in Robitussin, is an expectorant. Antitussives block the cough reflex. Dextromethorphan is an antitussive and is the product found in Drixoral, Delsym, Pertussin CS, and Robitussin. Dextromethorphan may cause confusion, agitation, nervousness, or irritability. Patients using a certain type of antidepressants (MAOI inhibitors) should not use dextromethorphan products.
Risk Factors for Medication Misuse
The biggest risk factor for older adults regarding medication misuse comes from actions such as:
- Taking extra doses
- Missing doses
- Not following instructions
- Using drugs that have expired
- Not knowing about or ignoring side effects
- Sharing or borrowing drugs
- Taking the wrong drugs
- Mixing medications or drinking alcohol while taking medications
- Going to multiple physicians to get more of the same drug or multiple physicians prescribing multiple drugs
- Instructions and package inserts written in small print or confusing language
- Failure to tell the doctor about over-the-counter medications, megadose vitamins, or herbals
- Missing instructions as a result of hearing, vision, or memory problems.
(Adapted from Substance Abuse & Mental Health Services Administration)