Friday, 11 November 2016 12:36

Chapter 32: Summing Up

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While most advocacy in India is done by friends and relatives, there are several independent professionals and organisations in the US who provide patient advocacy services for a fee. Many hospitals in the US now have full-time patient advocates. These staff members act as representatives for patients; and help to resolve grievances and improve communication with the medical staff. They are the equivalent of an ombudsman, and act as a bridge between patients and hospital staff.

In India, the word advocate is synonymous with a lawyer, which means it usually carries a negative connotation. However, in order to become a health advocate, you do not need to a get a LLB degree. Remember that the word advocacy means someone who champions a cause; and an advocate is someone who fights for your cause.

It’s helpful to have someone at your bedside in the hospital to make sure overworked nurses notice if your vital signs are going downhill or to ensure that the right medications are given at the right time. It’s good to have someone who can get on the Web and research your disease. And it’s important to have someone to take notes during doctor visits and ask the questions you forget.

If someone is ill, how can you become a patient advocate for that person? This is actually something we do informally for friends and family members. Trisha Torrey has as excellent website at www.everypatientsadvocate.com/index.htm which will show you how to do a better job. Becoming informed and working as a partner with health care providers helps to insure that the best possible treatment outcome will be achieved. As an advocate, you will need to wear multiple hats. You need to learn to network with doctors;
to coordinate appointments; to get specialists to talk to each other; to organise a hospital bed; arrange for blood; buy medicines; fill in medical forms and insurance paperwork; and to act as a caregiver and provide moral and emotional support. This can be a tall order and may sometimes be a thankless job – but its well worth it, because your efforts can spell the difference between life and death. And all these skills can prove to be invaluable when you fall ill yourself.
A “patient advocate” is a critical component in the healthcare delivery chain and a caregiver is in the best position to know and understand the needs of a loved one. Do you feel you are underqualified to take on this task? Remember, you already have all the skills you need to be a patient advocate. It does not require specialised medical training – all it takes are basic communication skills, the courage to do things differently and the willingness to think through a problem logically.

The field of Patient Advocacy is booming due to four trends in the healthcare industry:

  • Consumers want assistance in navigating the healthcare system so they can be active participants in their own health.
  • The healthcare industry is complex, fragmented and not patient- or family-centered. That makes it difficult for consumers to ensure they’re getting the care they want. Having an advocate empowers patients to understand and demand the plan of care that they need.
  • Due to escalating healthcare costs, consumers have become more savvy shoppers, who want to ensure that they will get the healthcare they need in the most efficient and cost-effective manner possible.
  • Trust in healthcare has eroded to the point that consumers are looking for trusted professionals for assistance in navigating the complicated healthcare landscape.

Keep in mind that being a patient advocate is not an adversarial position. As mentioned elsewhere in this book, it doesn’t necessarily mean rushing out and getting a second opinion on every matter, or conducting your own research and confronting a healthcare professional with your findings. This doesn’t mean you shouldn’t seek second opinions, or do your own research. On the contrary, this is often a wise approach. If you do decide to do your own research or obtain a second opinion, please speak with your doctor about it. Effective patient advocates do not breed discontent – they build and strengthen relationships.

What are some of the common mistakes a patient advocate may make?

  1. Fail to get consent to act as a patient advocate.
  2. Fail to recognise the patient’s preferences or personal communication style.
  3. Fail to recognise that behind every medical goal is a personal goal.
  4. Plant seeds of mistrust between the patient and the doctor. This book will help you avoid some of those mistakes.
Finally, you need not be an advocate just for a friend or family member. You can reach out and touch many patients, if you are willing to do so. Thus, if you suffer from a particular illness, you can setup a support group to raise funds and help others; or create a website to generate more awareness about the illness. Many people also find volunteering in a hospital allows you to help those less fortunate than you – and helping others is a great way of helping yourself. It’s emotionally gratifying work that you will never regret giving your time, training and energy to.
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