Editor’s Note: The following information about the role of patient advocates was recently “harvested” from the National Patient Safety Foundation, Boston, MA. The PDF seemed to reflect the needs of PRP patients worldwide.
The PRP Survival Guide uses the term “caregiver” while folks in the UK and elsewhere use the term “carer”. I would submit that a patient advocate is a caregiver or carer on steroids!
The Role of the Patient Advocate
Illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and put simply, you are not at your best when you are sick. Patients need someone who can look out for their best interests and help navigate the confusing healthcare system – in other words, an advocate.
What is a patient advocate?
An advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” It is important to consider all of these aspects when choosing an advocate for yourself or someone in your family. An effective advocate is someone you trust who is willing to act on your behalf as well as someone who can work well with other members of your healthcare team such as your doctors and nurses.
An advocate may be a member of your family, such as a spouse, a child, another family member, or a close friend.
Another type of advocate is a professional advocate. Hospitals usually have professionals who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It is helpful to find out if your hospital has professional advocates available, and how they may be able to help you.
Using an advocate – getting started
Select a person you can communicate with and that you trust. It’s important to pick someone who is assertive and who has good communication skills. Make sure that the person you select is willing and able to be the type of advocate that you need.
Decide what you want help with and what you want to handle on your own. For example, you may want help with:
Clarifying your options for hospitals, doctors, diagnostic tests and procedures or treatment choices
✽ Getting information or asking specific questions
✽ Writing down information that you receive from your caregivers, as well as any questions that you may have
✽ Assuring that your wishes are carried out when you may not be able to do that by yourself.
Decide if you would like your advocate to accompany you to tests, appointments, treatments and procedures. If so, insist that your doctor and other caregivers allow this. Be very clear with your advocate about what you would like them to know and be involved in Treatment decisions? Any change in your condition? Test results? Keeping track of medications?
✽ Let your physician and those caring for you know who your advocate is and how you want them involved in your care.
✽ Arrange for your designated advocate to be the spokesperson for the rest of your family and make sure your other family members know this. This will provide a consistent communication link for your caregivers and can help to minimize confusion and misunderstandings within your family.
Finally, make sure your doctor and nurses have your advocate’s phone number and make sure your advocate has the numbers for your providers, hospital and pharmacy, as well as anyone else you may want to contact in the case of an emergency.
What is a patient advocate?