The most awkward and painful discussions health professionals have is the conversation about end of life care. Working in Geriatrics, I often have this conversation with family members or even friends of patients who are not able to make their own decisions. Even in the best of circumstances, when the patient’s wishes are generally known, it is a difficult call to make. In the absence of any idea of what that person may have wanted, it can be heart-wrenching. In America, which is an especially ‘death denying’ culture, most people don’t want to think about, never mind plan for, their own death. But without clear Advanced Directives and and a Health Care Proxy you can trust, you risk having your final days be everything you never wanted – including a protracted, bitter battle amongst family members, a la Terri Schiavo.
The first thing you must do is admit that you will die. And it may not happen the way you would like or when you expect. You may become incapacitated for a period of time before death and be unable to direct your care or make decisions. This may happen from an accident or a heart attack or stroke. You may also develop dementia or another neurological condition that impairs your cognition. Any of these situations may happen at any time, so even if you think you are too young to think about this – you’re not.
Secondly, you must find a Health Care Proxy. A Health Care Proxy (HCP) is a person you appoint to make decisions about your care on your behalf. It is, in most cases, extremely simple to do this. Your doctor or hospital will have forms or you can find the forms on the internet. You simply fill out the forms, have them signed and witnessed and give copies to your HCP and your alternate, your health care provider, attorney and/or any one else who will be available to provide these forms to your medical providers if you become ill. There are also online registries, which for a fee, will archive your HCP paperwork or Living Will. Generally speaking, without an HCP, most hospitals and facilities will default decision making to your next of kin. However, that can easily get sticky and complicated should there be disagreement among family members or if long term relationships are not recognized by the laws of the state in which you become ill and seek care. It is not unheard of for facilities to seek to have a legal guardian appointed, should the family situation become unstable. Then you may end up with a stranger making decisions for you.
I will note here as well, that you do not have to appoint your legal next of kin as HCP. If you are not appointing your spouse, I would recommend that you have that discussion with them and involve an attorney in drawing up the papers.
Choosing an HCP should be done with care. You want to pick someone who will follow your wishes. It is important to note that your HCP does not have to abide by your wishes. The HCP you choose should understand and accept your wishes regarding end of life care and promise to act accordingly – even if your medical providers or other family/friends do not agree and pressure them to act otherwise. Also make sure you are using the appropriate paperwork for the state in which you reside or frequent. State requirements for HCP and Advanced Directives do vary. If you travel frequently, a trip to an estate attorney may be in order to obtain a durable power of attorney for healthcare decisions that will be iron clad wherever you roam.
Which brings us to Advanced Directives. I will go into great detail about all the decisions you will need to make in my next post. As a general overview, Advanced Directives are your written wishes about what kind of care you would want if you were unable to make your own decisions. The more specific, the better. Simply saying ‘no heroic measures’ is way too open to interpretation. In my next post, I will review the options and share with you my own Advanced Directives document.
The problem with Advanced Directives, however, is that they do not carry the force of law. It is simply a statement that you make regarding your philosophy of care for yourself. I have unfortunately seen clearly written and properly notarized Advanced Directives ignored, because the HCP or legal guardian had different ideas. But don’t let that stop you from writing them! The more information that is out there about what you want, the better. And all the more reason to pick your HCP with care and discuss your wishes with them
You don’t need an attorney to fill out paperwork for an HCP, however if your situation is complicated (e.g., not appointing your spouse, same sex couple in most states, long term unmarried couples) you may want to consult an estate attorney. It’s also a good idea to appoint someone to be responsible for your finances as well and draw up a will while you’re there.
My next post will explore the decisions you need to make – DNRs, feeding tubes, etc. Also, please let me know if there is any other information you would like to know.
Cartoon from jakejacob.blogspot.com.
UPDATE: I fixed the linkies.
