You can have your dying reflect your core values and who you’ve been all of your life. And communicating these wishes to your family and in writing—that’s important, otherwise who knows how you would like to die? That’s all good. To have an advance care plan and to talk about it with those you hold dear and to have such legal documents as a living will and appointing a health care power of attorney to speak for you when you are unable.
But there’s a huge barrier to your dying plan you need to know about. The information isn’t there when you need it. It’s not there for your proxy and it’s not there for health care providers. If you didn’t create an advance care plan, then it’s not available during an emergency because it doesn’t exist! But, even if you did, there’s no guarantee that it will be available and respected. In an emergency if no advance care documents can be found, the protocol is to save.
But how do you improve the chances of your health care wishes being there with you and for you? What can you do to give yourself the peace of mind that your proxy is present and that wishes are known and honored? Let’s step back and consider why this informational void exists. What’s being done now? You have a plan and you made copies of the documents. You either put them in a safety deposit box or in the top drawer of your desk. You give a copy to your doctor to put in your medical records and a copy to your proxy. Maybe you carry an advance care plan wallet card telling of their location and how to contact your proxy. But the documents are still not there when you most need them. This certainly reinforces the sustained criticism that your plan for dying is as good as it’s known existence and accessibility to it.
Your advance care information might be registered with a state or private national registry, a central repository for storing advance directive documents and information for proxy or health care provider access. But does a registry improve access? The focus of registries is registering not information sharing with providers and proxies and merely seems to protect against misplacement of the document by the recipient. An inherent flaw with some registries is limiting access to those who have the patient’s identification access code. Clearly accessibility is definitely improved with electronic registries that allow providers access independent of a registrant’s code.
There’s another possibility. Medical records and electronic health records systems are reasonable resources for physicians to access a patient’s AMD using a direct search feature. In effect, the electronic health records system is a registry. But your plan isn’t there unless you’re admitted at hospitals within that system and it doesn’t allow instant availability of such documents to a patient or proxy wherever they are.
But what about using an App as a registry? An App for your smartphone or tablet could be a transformative game changer. It can revolutionize information sharing of end-of-life wishes during a medical crisis so that your advance care documents and information can be instantly conveyed and delivered. You could securely store and retrieve these documents in PDF, and export them to any hospital or physician in minutes. They are stored only on your smartphone not at a central repository, within a hospital’s electronic health records database, in a cloud or on a server.
There is such an App—My Health Care Wishes and it’s available on iTunes and Google giving you immediate access to PDF versions of the living will, advance medical directive (AMD), health care power of attorney (HCPOA, health care proxy), DNR order, psychiatric advance directive (PAD) and POLST (Physician Orders for Life-Sustaining Treatment).
Imagine having your wishes and those belonging to your loved ones away at college, in a retirement community or nursing home, working in a different city, or under the same roof, stored in one place and a click away, “just in case.” Import and store them on your smartphone so they’re there for medical decision-making anytime anywhere.
The App is not the perfect solution to accessibility but it’s far better than what is out there now. Its use is limited of course to those who have smartphones, but that’s a lot of people. And those with smartphones can carry the wishes of those who don’t, especially elderly loved ones. And it does something nothing else has been able to accomplish; it instills in our families the importance of doing an AMD! This is true because we as a family carry each other’s wishes in our back pocket or in our purse 24/7. It’s a game changer and an attention getter on doing something about dying care.
It’s heartbreaking that so many of us aren’t happy or at peace with what happened to a loved one who died recently or even a long time ago. Frequently we hear someone express guilt that they couldn’t prevent their death or help them get through it with less pain and suffering. Others say they feel remorse because they couldn’t let a loved one go and that decision led to unnecessary suffering and pain. Often those who’s lost a loved one are devastated because they decided to “pull the plug” and were on what amounted to their loved one’s “death panel.”
Such feelings are common.