Speaking Up for Your Loved One: How to Advocate for your Hospice Patient

Perhaps it’s the intimidation you feel when you see a white coat and a name tag with the initials, “M.D.” Or, maybe you’ve never been the one in your family to be “in charge” of anything before.

But now your loved one has a life-threatening or terminal illness, and the responsibility has fallen on you (formally or informally) to make sure she receives the best and most appropriate care. Do you know when, why and how to advocate for your patient? It can be intimidating and frustrating if you’re unprepared, or if you don’t feel you “own the power” to do so.

Becoming an advocate helps ensure that your loved one gets the end-of-life care she both wants and needs, by being a voice and a watchdog for her and making sure her wishes are carried out. Below, the expert staff from Hospice of Cincinnati answer the most commonly asked questions about serving as a patient’s advocate.

Who can be an advocate? Is this the same as a health care proxy (power of attorney)?

A health care advocate may or may not be designated as a patient’s health care proxy.

A health care proxy (also called a health care agent or Power of Attorney for Health Care) is the person legally designated to make health care decisions for someone if she’s too sick to make them for herself. This is written up in documents known as advance care directives, which include living wills, power-of-attorney documents, MOLST and POLST forms and do-not-resuscitate (DNR) orders.

The health care proxy has legal permission to talk with the patient’s doctors, consult her medical records and make decisions about tests, procedures and other treatment. The proxy can be a family member or a trusted friend.

Ideally, the patient’s advocate should be also be her health care proxy. But even if a patient hasn’t completed advance directives and designated a proxy, she still needs someone to advocate for her while receiving care. That’s because while a patient may be capable of making decisions for herself, she may not always feel well enough or focused enough to address every minute detail of the numerous medical, legal and financial decisions that need to be made from day to day. While health care advocates may not have legal rights to certain patient information or to make decisions for the patient, you can still help by chasing down information, getting questions answered and managing other details of patient care.

Why do patients need advocates?

There’s a number of reasons why a hospice patient should have a health care advocate. Dealing with the prognosis of having six months or less to live can leave a patient overwhelmed and distraught, so having someone by her side to help manage the difficult road ahead can be a tremendous relief. And since hospice patients have varying degrees of mental acuity and awareness, having a healthy and alert advocate at hand to pay attention to critical details, and articulate concerns and questions, can ease the patient’s mind at a complicated time.

How do I advocate for my loved one?

To be an effective advocate for your hospice patient, you should:

• Educate yourself about hospice care, your patient’s medical condition and diagnosis and financial and legal matters surrounding end-of-life care.
• Be present during exams and medical appointments (with the patient’s permission), and take notes.
• Ask direct questions of the medical staff and caregivers. This includes asking the “when, where, what, why, who and how” of all aspects of the patient’s care.
• Keep an updated list of the patient’s medications, looking at what was prescribed, how much and why, and ask questions if there are any concerns.
• Serve as the chief organizer, making sure all medical, legal and financial matters are addressed.
• Be respectful, but also be tenacious. Don’t give up until you get the answers you need to make sure your loved one gets the best possible care, and ask for clarification on anything you don’t understand.

When does a patient need an advocate?

Anyone who has received a serious diagnosis, whether or not it is life-threatening, should designate someone to help her navigate a complex medical system. That person should also have the strength and trustworthiness to help the patient have the best life possible at a most difficult time, when she is most vulnerable.

For more information about choosing a health care proxy, check out our Conversations of a Lifetime website. And to learn more about hospice care, visit HospiceofCincinnati.com.