Patient Advocate

An emerging trend is the use of a patient advocate. This is a role that could be taken up by the primary caregiver, a family member, a friend or a professional.

An average doctor visit lasts less than 15 minutes, but you may have lot more questions—about your illness and treatment options. Until recent past, the general recourse has been to ask a nurse, social worker, or the staff at the health insurance company. Over the past decade, however, a go-to person known as a patient advocate has appeared on the health care roster. This person can provide answers, education, support, and care to patients.

Your patient advocate can make decisions for you only when you become unable to participate in medical treatment decisions yourself. For example, you might have a temporary loss of ability to make decisions or communicate due to a stroke. Or you might suffer permanent loss through a degenerative condition, such as dementia.

Why Do You Need a Patient Advocate?

In the immediate period after a stroke occurs, it is likely that the patient and immediate family may be emotional, confused and not sure of the best course of action. This is not a reflection on people's competence. If someone has not previously been affected by a stroke (their own or that of someone they know), it's unlikely that they will know the medical situation and what are appropriate treatment options.

The other consideration is that medical practitioners typically respond to the "average" situation. They have numerous people dependent on them for care, and are often overworked. They are trying to spread themselves across the patients and other medical practitioners who need their guidance. It is not surprising that the answers that come are "generic". But the generic procedure may not be appropriate to you.

The role of the patient advocate is to make sure that the treatments being undertaken are the most appropriate for this patient. This means understanding the medical treatments, reviewing the options and making an informed decision on how to go forward.

Key skills for the patient advocate are being able to research medical procedures, learning how prescribed drugs work, their contraindications and adverse side effects, and effective risk-based decision making.

Recommended Reading Stephen Schneider, in his book The Patient from Hell, eloquently describes how he and his wife partnered to challenge the doctors and probably saved his life when faced with life-threatening cancer. Although the disease is different, the approach they used is relevant for stroke patients.  One very simple experience that we had was of a doctor prescribing an anti-inflammatory drug that caused a contra-indication. Peter's leg bruised badly and became incredibly swollen and painful. We spent a day in the emergency department being tested for DVT / blood clots to no avail. It was ultimately my research (on the internet) that identified the contra-indication.

On an ongoing basis, the role of the patient advocate is to ensure that ongoing and adequate treatment is forthcoming and appropriate for the patient. (Check out our tips) 

Some doctors welcome the extra set of eyes and ears an advocate can provide. Others find the presence and opinions of an extra person unnecessary, at best, and intrusive and distracting, at worst. It's best if you are able to work in collaboration with your doctors, however, be assured that it is your right to be actively engaged in decisions that affect you.

Risk-Based Decision Making

As mentioned above, doctors are typically making medical decisions about patients based on the average patient.

As an example, recommended drug dosages are all based on a person of a particular weight. If you are significantly under or over that weight, there is a risk that the medicine will have a different effect to that desired.

For the patient, family and friends, decisions may be made emotionally, with insufficient information or without due consideration of the information that is available.

Risk-based decision making involves:

1. Understanding what the potential outcomes from a treatment or intervention may be.
2. Understanding the odds of each potential outocome occurring.
3. Understanding how accurate the odds are (i.e. is the doctor basing this assessment on statistical data or a gut feel?)

Based on this information, the treatment that is most appropriate can be selected.

Patient Advocate Services

It's not necessary that the patient advocate role be undertaken by the patient, caregiver, family or friends. Other sources of such services are:

• In hospitals - If hospitals offer customer service, it is often through a patient advocate. This person can be called upon by a patient or his family member when they run into problems that relate to care, or more often, payment for that care. These advocates may not be trained in formal advocate training courses. Patients often seek their help when they are frustrated or require assistance for everything from needing a ride home from the hospital, to needing a hospital bill explained.
• Individual professionals - Healthcare assistants in the early years of building a career may offer services to help patients. They often intend to do social work, and have been coordinating care for patients for years.

Advocates’ services aren’t certified and tend not to be covered by insurance. Consumers should have a clear understanding of charges for services and payment options before hiring an advocate. Most importantly, advocates provide great mental support by helping you feel less beleaguered by the health care system or better informed about your condition.

You can give a patient advocate power to make personal care decisions you normally make for yourself. For example, you can give your advocate power to consent to or refuse medical treatment for you; arrange for mental health treatment, home health care, or adult day care; or admit you to a hospital, nursing home, or home for the aged.

You can also give them the right to withhold or withdraw treatment that would allow you to die, but you must express in a clear and convincing way that this person is authorized to make such decisions, and you must acknowledge these decisions could or would allow your death.

Your patient advocate does not have general power to handle all your property and finances. If you wish another person to handle all your property and financial affairs if you become incapacitated, you could seek a lawyer's help to draft a durable power of attorney for finances or a living trust.

DIY Patient Advocacy

In many cases, a family member or friend takes on the role of patient advocacy. Most of the time, this role is thrust open them in response to the difficult situation of someone facing a life threatening or chronic illness. And this means that the person is not prepared to take on the role. They do their best, but it would help to have some tips on what the role entails and how to do it well.

In response to this need, we have prepare our Stroke Patient Advocate e-book, to assist someone in taking on this important role. Click here for more information.