By JUDD MATSUNAGA, ESQ.
Being asked to be someone’s health care agent is a special honor — it means the person is saying, “I trust you with my life.” That said, it’s also a huge responsibility. As a health care agent, you will be in charge of making healthcare decisions for your loved one when they can no longer make decisions for themselves.
Realize that your legal and ethical duty as agent is to make decisions in keeping with your loved one’s instructions and other values, goals, and priorities to the extent that you know them. You will be asked to make decisions about medical care, including treatments, tests, and surgeries. You’ll also be asked about life support and end-of-life care, as well as where your loved one will get medical care, such as a hospital, nursing home, or hospice facility.
As a health care agent, you will talk with your loved one’s healthcare providers. You will have full access to your loved one’s medical information. You will only be able to make decisions about their medical care, e.g., treatments, tests, and surgeries. Being the health care agent does not give you legal authority (power) to make decisions about their finances, i.e., money and other assets.
Also, being a health care agent is not about what you want for your loved one. It’s about what your loved one wants for themselves. So, it’s important to talk with your loved one about their wishes before they become very sick. Before you say “yes,” make sure that you feel comfortable carrying out the person’s wishes and that you don’t feel morally or religiously opposed to their requests.
Advance care planning is a process. It’s not something that gets done all at once. To help you be an effective health care agent, here are some questions you can ask your loved one: (Source: www.mskcc.org, “How to Be a Health Care Agent”)
? Tell me about situations that would make you want to limit medical treatments.
? How much you are willing to go through so you can live longer?
? What are your feelings about palliative care?
Palliative care is also called supportive care. It helps to ease pain and other symptoms of illness. It’s an approach to care that focuses on you as a whole person, not just your illness. It includes physical, emotional, and spiritual care for you and your loved ones. You can get palliative care at any point during an illness, even while you’re still getting treatment. Palliative care does not need to be end-of-life care. It’s not the same as hospice care.
While palliative care can start at any point of an illness, hospice care starts after you stop getting treatment. It starts when you have six months or less to live. It provides end-of-life comfort and support to you and your loved ones when treatment is not working or wanted anymore. Hospice care can be given in nursing homes, assisted living facilities, hospice centers, or in your home. Here are examples of questions you can ask your loved one:
- Do you want to get hospice care at the end of your life?
- What are some things that would make the end of your life most peaceful?
- What are your biggest worries or fears about the end of your life?
Sometimes healthcare providers try to keep someone alive with medical devices, such as ventilators and feeding tubes. These devices are used in life-saving treatments that we describe below. Talk with your loved one about which treatment they may want. Ask them about situations when they would want these treatments. Ask them about specific life-saving treatments they would not want. For starters:
Question 1— What to do if your heart stops beating?
Cardiopulmonary resuscitation (CPR) can be given when a heart stops beating. To try to restart your heart, healthcare providers do chest compressions while putting air into your lungs. They push down hard and fast on your chest to keep blood flowing throughout your body. They may also use a defibrillator (a machine that sends electric shocks to your heart). Here are examples of questions you can ask your loved one:
- What are your feelings about having CPR?
- In what situations do you want CPR?
- In what situations do you not want CPR?
Some people do not want to get medical treatment if their heart stops beating. They would rather have a natural death. They can put this decision in writing by setting up a “do not resuscitate” (DNR) order. A DNR order is also called a “do not attempt resuscitation” (DNAR) order or an “allow natural death” (AND) order. It tells healthcare providers that you do not want CPR if you stop breathing or your heart stops beating.
Question 2— What to do if you stop breathing?
If you stop breathing while your heart is still beating, healthcare providers will try to put air into your lungs. Ventilators are machines that help you breathe. A breathing tube connected to the ventilator is placed down your throat and into your trachea (windpipe). This helps the ventilator put air into your lungs. The process of placing the breathing tube down your throat is called intubation.
Because the breathing tube can be uncomfortable, you will be sedated (sleepy) while on the ventilator. Here are examples of questions you can ask your loved one:
- What are your feelings about being placed on a ventilator?
- In what situations do you want to be placed on a ventilator?
- In what situations do you not want to be placed on a ventilator?
Question 3— Do you want artificial hydration and nutrition?
There are times when you are unable to drink or eat by mouth. This treatment replaces the way you normally eat and drink. It adds to it if you sometimes can eat or drink. You may be fed through a feeding tube that puts liquids and food into your body. The tube is placed into your nose, down your throat, and into your stomach. Some people may need to have a feeding tube for a long period of time. If this is the case, you will have surgery to place it directly into your stomach or intestine.
You may also get an IV (a small, thin, flexible tube) that puts nutrition directly into your vein. Artificial hydration and nutrition can be used if you’re not able to eat or drink enough during treatment. It can also be used to keep your body alive if you’re unconscious (for example, in a coma). Here are examples of questions you can ask your loved one:
- What are your feelings about artificial hydration and nutrition?
- In what situations do you want to get artificial hydration and nutrition?
- In what situations do you not want to get artificial hydration and nutrition?
To help you be a more effective health care agent, Harvard Medical School has published a Special Health Report called “Advance Care Planning” that offers the following tips:
- Be sure you know everything possible about your loved one’s values, goals, and priorities at the time the health care power of attorney is signed. And check in with him or her every now and then — especially after a change in health — to find out if those feelings have changed.??
- If your loved one becomes sick, be sure the staff of the nursing home or hospital knows you are the health care agent. Be prepared to bring or fax a copy of the health care power of attorney. (Email is not considered secure.) Keep a copy handy in your home or car, so you won’t have to hunt for it in an emergency. Be sure you know where the original is located, so you can bring it, too, if requested.
- Don’t be afraid to ask questions to make sure health care workers are honoring your loved one’s wishes. Remind people firmly of those wishes as needed. Be as pleasant as possible, but don’t back down.
- Make sure you understand your loved one’s medical condition and the likely outcome. Sometimes doctors use unfamiliar terms. Ask them to explain in simpler terms until you fully understand the situation and options. Also make sure you and the doctors are speaking the same language. For example, your loved one may define “recovery” as living without the use of organ support like dialysis, but it may mean something else to the doctors.??
- If you’re wondering whether to start or stop a treatment, ask the doctor to discuss what you know about the patient’s goals for care and priorities. Together, focus on how to translate these goals into a course of treatment. If the treatment fails, regroup and consider the next option.
- Treatment decisions often require you to weigh potential benefits versus burdens. Always think about what your loved one would consider a benefit or burden, not what you or anyone else might think.??
- If diagnostic tests are recommended, ask what difference the results will make to treatment. If the impact will be little to nothing, the test might not be worth doing, especially if it involves discomfort, risk, or excessive expense.??
- If you feel your loved one’s wishes are being ignored, talk to a social worker, patient representative, chief medical officer, or the institution’s ethics committee or lawyer. As a health care agent, you are an advocate for someone who can’t advocate for himself or herself. Don’t be afraid to do whatever it takes to ensure that your loved one’s wishes are recognized and respected.
- Recognize that some decisions are especially hard to make and might cause you to feel very sad, even if you feel you are carrying out wishes as planned.
In conclusion, part of your job as agent is to explain what is going on to other caring family members. Tactfully inform the family that you were designated by the patient as his or her spokesperson, so you are the ultimate decision-maker, but you understand the concerns of others and will keep them all “in the loop.” Often, it’s useful for the health care team to hold a family meeting to share information and perspectives.
Finally, if you’re not comfortable taking on the role of a health care agent, it’s OK to say so. You may not agree with your loved one’s wishes. You may not be comfortable with making end-of-life decisions for them. No matter what your reason is, it’s OK to be honest. You can say: “I’m honored, but I do not think I can do a good job being your health care agent.” This way, your loved one can think about who else they may want as their health care agent.
Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those ofThe Rafu Shimpo.