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Are you having back pain with any of the following?

  • Severe pain, weakness or tingling in your leg(s).
  • Difficulty stopping urination or loss of control of bladder or bowels.
  • Unexplained fever, nausea or vomiting.
  • A history of cancer or unexplained weight loss.

We understand that you are experiencing one or more of the health issues that might be impacting your back pain.

We recommend that you discuss these health issues with your doctor before proceeding with this program.

Once you are cleared by your doctor to do this program, we hope it helps you find relief from your back pain.

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Overview

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As a caregiver, one of your most critical responsibilities is making sure that your loved one receives the medical care needed. You may have to speak on your loved one's behalf to the doctor and other health care providers and help make decisions about your loved one's ongoing care.

In addition to keeping medical appointments, it is important to be well informed about your loved one's condition and communicate effectively with doctors, nurses, physical therapists, and other care providers. You must know when and how best to communicate and how to find the care that is needed at the right time. You may also be the primary person responsible for communicating about your loved one's health status to the rest of your family.

Your Role as an Effective Patient Advocate

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A patient advocate is someone who performs the following services:

  • Communicates to doctors and other care providers on behalf of a patient.
  • Monitors a patient's ongoing treatment.
  • Oversees a patient's medication usage.
  • Makes sure that a patient understands and follows doctors' directions.
  • Helps to choose the best treatment options for a patient.

An effective patient advocate will:

  • Communicate well with different people.
  • Understand the patient's condition, doing research if necessary.
  • Respectfully stand up for the patient's needs when necessary.
  • Respond flexibly and creatively to problems.
  • Keep a list of questions or other concerns to take to the next doctor's appointment.
  • Be well organized and manage time effectively.

Most patient advocates are professionals who work for a health organization, government program, or health-related business. However, training is not required to be a patient advocate, and a caregiver/family member often will assume this role. 

As your loved one's caregiver, you may be the most effective patient advocate. You observe your loved one every day and may notice symptoms and behaviors that a professional advocate would not have the opportunity to see.

In your role as patient advocate, it is essential to keep track of your loved one's status and behavior, including:

  • Eating and sleeping habits
  • Emotional episodes, such as weeping or angry outbursts
  • Disease symptoms
  • Compliance with (or resistance to) doctors' instructions and prescribed medications
  • Medication usage
  • Side effects from medication 

It is best to keep a written record of all this information.

When a decision needs to be made about your loved one's care, you may either make the choice yourself or bring the matter to your family for discussion. Be aware of your loved one's concerns and preferences. Allow your loved one to speak for him or herself as much as possible.

Managing medication

As caregiver/patient advocate, you are likely to be the person responsible for overseeing your loved one's use of medication. Here are some general guidelines to keep in mind:

  • Do NOT crumble, crush, or cut capsules or pills before checking with the pharmacist to make sure this is okay. Doing so could alter the rate at which medicine is released in the body.
  • Properly dispose of medication that has reached its expiration date.
  • Store medications in a cool, dry place, NOT in the bathroom.
  • Make sure to obtain all prescription and over-the-counter drugs at the same pharmacy, so that the pharmacist can keep track of all your loved one's medications and make sure there are no potentially harmful interactions.
  • Let your loved one's primary care physician know about all prescription medications being taken and about any changes to medications that may have occurred after an Emergency Room visit.
  • Check with your loved one's doctor before allowing him or her to take over-the-counter pain relievers, cough syrups, decongestants, laxatives, or any other medicines that have not been prescribed.
  • Never change the dosage of a medication unless so directed by a doctor.
  • Have your loved one finish the entire prescription, even if symptoms go away before the medication is gone (unless the doctor instructs otherwise).

Getting the Most Out of a Medical Appointment

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Seeing a health care provider is an opportunity for you to clarify your questions and concerns about your loved one's condition. When you bring your loved one to the doctor (or other health care provider), it is important to come prepared so that you will have all the information you need when you leave. 

The following are guidelines for getting the most out of a medical appointment:

  • Write down all of your questions in advance and take the list with you. It is likely that other questions may arise during the appointment, but having questions prepared ahead of time will make getting the information you need much easier. You can start your list a few days before the appointment and add to it as other questions occur to you.
  • Be prepared to describe your loved one's symptoms and behaviors. If you have been writing down your observations, bring this record with you so you can refer to it when you talk to the health care provider. Be open and direct in response to the health care team member's questions.
  • Listen well. When the health care provider gives instructions or provides information, repeat back what you have heard to make sure you have understood correctly. Ask questions if you have any uncertainty.
  • Take notes. During and/or after the appointment, make notes on what you have been told regarding your loved one's condition, what you need to do, and what to expect.
  • Know the routine at the doctor's office. Each medical clinic or doctor's office may have its own procedures. The better you "know the ropes," the more efficiently you can get the attention you need.
  • Be on time for your appointment. Arrive up to 15 minutes early for your appointment whenever possible. Allow extra time for parking and getting from the car to the doctor's office. This will facilitate good communication.
  • Consider bringing along another person for support. A relative or close friend can help you retain information from a medical appointment. Also, the extra person may think of important questions during the appointment that might not have occurred to you.
Additional References:

Working with Health Care Professionals

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The following are guidelines for establishing and maintaining cordial, respectful relationships with your loved one's health care team:

  • Make sure that the health care team knows who you are, what your role is, and how to contact you.
  • Educate yourself about your loved one's condition, using the Internet or the library to do research. This way, your questions will be well informed and specific.
  • If you have many questions and concerns for the doctor, consider making a consultation appointment, rather than trying to obtain all your answers during a medical appointment. During a consultation appointment, the doctor can address your concerns in an unhurried, focused manner.
  • Ask your questions in an appropriately private setting, such as the health care provider's office. Do not try to obtain quick answers in a waiting room or hospital corridor, where the doctor is likely to be distracted and strangers may be within hearing distance.
  • Be appreciative. Say "thank you" often.
  • If you feel uncertain about a doctor's diagnosis or treatment recommendation, or you don't feel the doctor is giving you all the information you need, you may elect to switch doctors or get a second opinion.
  • If you are a Kaiser Permanente member, consider using secure e-mail for questions to your loved one's provider. With your loved one's permission, you can request access to some of his or her medical record and communicate via secure e-mail with their doctor through the online feature, "Act for a Family Member."
  • Consider setting up a telephone appointment visit (TAV), which may be available for you. When you call for an appointment, ask your KP representative if you can schedule a telephone appointment. During a TAV, you can speak with a doctor on the phone from the convenience of your home or other location. Telephone appointments are normally scheduled for the same day or the next day.

Becoming or Designating a Health Care Agent

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A caregiver is also often the designated health care agent, also known as a surrogate decision maker, for a loved one. To be a person's health care agent, your loved one must have signed a Durable Power of Attorney for Health Care or an Advance Health Care Directive, specifying the types of care he or she does or does not wish to receive in the event of severe or terminal illness and naming you as the health care agent.

A health care agent has the authority to make medical decisions on behalf of another person when that person is no longer capable of making his or her own decisions. Such decisions may include:

  • To allow a natural death
  • Who the person's health care providers will be
  • Whether to continue life-sustaining treatment, such as a ventilator (breathing machine) or tube feedings
  • Whether to use tube feeding and hydration when the person can no longer eat or drink normally
  • Whether to authorize surgery and/or other medical procedures

A health care agent's decisions must be based on what is known of the loved one's wishes, whether those wishes are documented in the Advance Health Care Directive or have been expressed in conversation.

When the loved one's wishes are not known, a health care agent will normally consult with the loved one's health care team about the disadvantages, risks, and benefits of different treatments or care options.

The health care agent and the family

As caregiver/health care agent, you may choose to make decisions together with other family members. If family members disagree about what to do, the final decision must rest with you, based on what you believe would be your loved one's wishes. However, when there is no urgent need to make a decision quickly, it is usually best to take your time, think matters through slowly, and try to bring family members into agreement.

You are the liaison between your family and your loved one's health care team. As such, you are responsible for communicating to other family members about your loved one's health status on an ongoing basis. However, you should designate at least one other person in your family to be an alternate contact person for your loved one's health care providers.

You are responsible for deciding when and if your loved one can no longer be cared for at home and should be transferred to a nursing home or hospital. If your loved one has a terminal diagnosis, you will decide where his or her final days will be spent, and when (or if) to call for the spiritual support of a clergy person who can come to your loved one's bedside.

All of these are very delicate and emotionally fraught decisions that will affect other members of your family as well as you and your loved one. Be prepared for some family members to disagree with you. Always keep in mind what you believe your loved one would choose, rather than what you would choose for yourself in the same situation.

If you have an emergency medical condition, call 911 or go to the nearest hospital. An emergency medical condition is any of the following: (1) a medical condition that manifests itself by acute symptoms of sufficient severity (including severe pain) such that you could reasonably expect the absence of immediate medical attention to result in serious jeopardy to your health or body functions or organs; (2) active labor when there isn't enough time for safe transfer to a Plan hospital (or designated hospital) before delivery, or if transfer poses a threat to your (or your unborn child's) health and safety, or (3) a mental disorder that manifests itself by acute symptoms of sufficient severity such that either you are an immediate danger to yourself or others, or you are not immediately able to provide for, or use, food, shelter, or clothing, due to the mental disorder.

This information is not intended to diagnose health problems or to take the place of specific medical advice or care you receive from your physician or other health care professional. If you have persistent health problems, or if you have additional questions, please consult with your doctor. If you have questions or need more information about your medication, please speak to your pharmacist. Kaiser Permanente does not endorse the medications or products mentioned. Any trade names listed are for easy identification only.

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