Some of our most important decisions concern end-of-life care matters impacting ourselves and our loved ones, yet many of us avoid conversations about such topics and put off obtaining the necessary documents and legal guidance. As attorney Deb Kinney reminds, now is the time to make appropriate plans to ensure your wishes are followed.
Kinney is a partner at Johnston Kinney and Zulaica LLP, a law firm with 11 attorneys specializing in estate planning, trust administration and probate. She regularly lectures on topics such as health care documents, and helps clients to make sure their affairs are in order. She also works closely with Hospice by the Bay to provide educational seminars in the community.
Kinney recently took time to answer some key questions about planning for end-of-life care decisions.
San Francisco Bay Times: What are health care documents, and do I really need them?
Deb Kinney: April is National Health Care Decision Month—an annual reminder regarding the need for written health care documents. The need for these documents cannot be stressed enough. Whether you are married or single, younger or older, with private insurance or on Medicare or Medi-Cal, having these documents properly executed in advance will make sure that you can have the care and advocacy that you would want in a medical situation. The documents that are necessary are an Advance Health Care Directive, an HIPAA release, a Hospital Visitation Authorization, and a POLST in certain circumstances. (Read on for descriptions of each.)
San Francisco Bay Times: What is the most important document?
Deb Kinney: Without question, your Advance Health Care Directive is the most important document. It says who you want making your decisions and acting on your behalf, whether or not you want life-prolonging medical measures if you are not expected to survive, and if you want to be an organ donor. If that is all you fill out, then you are already better off.
San Francisco Bay Times: Who should be my health care decision maker? What if I don’t have kids or family who are close by?
Deb Kinney: Your primary decision maker should be someone you trust who will be a good advocate in the hospital on your behalf and who can carry out your personal wishes. They don’t need to be related, but should be able to navigate the sometimes complex issues that can arise. We always suggest that you have at least two people in line. If you don’t know who that could be, there are professionals that are trained and can be of great help to make sure you are getting the care you need.
San Francisco Bay Times: Don’t most individuals want to make their own decisions for as long as they can?
Deb Kinney: Yes, and they should. But we often recommend that you let your decision maker have authority as soon as the document is signed, which doesn’t require that you be incapacitated prior to them acting on your behalf. For example, you could be coming out of surgery and be groggy and need someone to run interference on your behalf. By taking out the incapacity requirement you can have that help immediately. Hopefully you have chosen someone you trust who will work with you whenever appropriate.
San Francisco Bay Times: What is an HIPAA release? Isn’t that already in my Health Care Directive?
Deb Kinney: Congress passed the HIPAA (Health Insurance Portability and Accountability Act) and, as a result, one’s medical information is private and confidential. Although this is a very good thing, if you were to need help making decisions, your people cannot access your records or talk to nurses, doctors or providers without a written authorization. As many of us don’t need help with such decisions until we aren’t feeling well, it is important to have an HIPAA release signed in advance.
An HIPAA release is usually granted to your decision maker, but if you want to have more than one person on deck to help, you can allow them all to access you and your medical records at the same time. This can be especially helpful if one of your designees is dealing with doctors, another with insurance claims and another with other issues like finding a good rehabilitation living situation or exploring clinical trials on your behalf. Remember that these documents are used when you are not feeling well.
San Francisco Bay Times: How about those of us who are married? Do couples really need these documents?
Deb Kinney: Yes! Although many people feel like their spouse or registered domestic partner has all the rights to make decisions for them, having a backup to each other is super important. It may be that your partner is also injured or ill at the time you need help. Also, since HIPAA laws were passed to keep medical information private to you alone, even your spouse will need authorization absent emergency circumstances, and also to help file insurance claims or deal with Social Security or Medicare issues on your behalf.
San Francisco Bay Times: What is a Hospital Visitation Authorization?
Deb Kinney: It is a simple one page document with a big notary stamp that says your unrelated partner or your best friend should be allowed to access you in the hospital even if access is limited to “family” only. They may not be making medical decisions yet, but want to be with you—and given that other states may try to limit same sex families’ rights and recognition, we suggest that all of our clients execute one, whether married or not.
San Francisco Bay Times: Do I need a POLST?
Deb Kinney: Maybe. A Physician’s Order for Life Sustaining Treatment Form is in addition to an advanced directive, and is only for folks with a serious illness, advanced frailty, or who are near the end-of-life. It is filled out with your primary physician and more specifically outlines your end of life wishes and care. We sometimes recommend to certain clients that they think about having this conversation with their primary doctor to see if it is appropriate. It has replaced the DNR (Do Not Resuscitate) form, but it’s still bright pink.
San Francisco Bay Times: What do I do with these documents once I have them all in writing?
Deb Kinney: Please give a copy to each of your decision makers so that, if there ever is an emergency, they have them and can show that they are the person you selected to help you. You can also give a copy to your doctor or upload them to your provider, like Kaiser. Remember you can always update them if necessary.
San Francisco Bay Times: Having conversations about these topics isn’t easy. Do you have any tips?
Deb Kinney: Having the conversation about end-of-life issues may not be easy, but it is one of the most important things you will ever do. We’re all different, so there is no right or wrong answer about how to approach it. For some, it may be easier to start thinking about such matters on your own. Or, when you initiate the conversation with others, try not to make it too heavy at first—and perhaps have several small conversations about the topic. When you are done, make sure to document it and share it with others. For more tips, visit wehelpyoudeal.org
San Francisco Bay Times: Where do I go for more information or to obtain the necessary forms?
Deb Kinney: You can download an Advance Health Care Directive from Hospice by the Bay’s website at www.hospicebythebay.org
Please check with your physician or attorney to obtain other forms.