: Kathleen (Katie) May
As the 7th annual National Health Care Decisions Day approaches, it is a time for each of us to reflect on what we have done, what we are going to do, or what we are not doing to ensure our end-of-life wishes are honored. “National Healthcare Decisions Day reminds families about available resources and allows them the opportunity to include the patient’s wishes in critical conversations on health care decisions,” said National Academy of Elder Law Attorneys (NAELA) President, Howard S. Krooks, CELA, CAP.
Ensuring that our end-of-life wishes are honored requires multiple steps, all which are crucial to ensure the effectiveness of our advance health care directives.
1) Every competent individual over the age of 18 should execute the basic legal documents available in his or her state which provide for the expression of end-of-life wishes.
In Illinois, these documents include:
- Durable Power of Attorney for Health Care;
- Living Will;
- HIPAA Authorization;
- Uniform Do-Not-Resuscitate (DNR) Advance Directive (POLST);
- Declaration for Mental Health Directive.
2) Your designated Agent must be aware of your wishes in order to be able to make the decision you would have made if you were able.
3) These decisions and agency appointments MUST be revisited and re-communicated regularly, as thoughts and views on treatment are likely to change with the passage of time, and as the treatment options change with future advances in medicine.
Step One. Execution of Pertinent Illinois Advance Directives
♦ Durable Power of Attorney for Health Care. The Illinois Power of Attorney for Health Care appoints a proxy health care decision-maker (Agent) to act when you are unable to communicate your wishes or are unable to consent to or deny a course of treatment. The statutory form provides guidance to the Agent with regard to his or her ability to authorize organ donation and regarding the scope of authority the Agent has in making end-of-life decisions.
In Illinois, once you attain the age of 18, you are deemed to be a competent adult unless adjudicated otherwise. This is an important legal principal because it is then that you are legally able to make your own medical decisions. Loved ones need your written authorization to obtain protected health information. Therefore, parents are no longer privy to confidential health information for children who are in college, or are disabled but live independently in the community. Likewise, children don’t legally have access to their parents’ health records, which can cause frustration for families attempting to assist an aging loved one.
NOTE: A “disabled” individual may have the ability to execute a Power of Attorney for Health Care. Regardless, it is critical that, to the extent a “disabled” individual can participate in a health care decision being made on his or her behalf, the disabled individual should be included in that decision. While it may be easier and more efficient for an agent or family member to make the decision, the individual must be consulted on any and ALL decisions when he or she may be able to express a preference, opinion or desire.
One of the most common misconceptions surrounding the Power of Attorney for Health Care is that, having signed a Power of Attorney, you do not need a Uniform DNR Advance Directive. If you only have a Power of Attorney for Health Care and go into cardiac arrest, Cardio Pulmonary Resuscitation (CPR) will be initiated. If you wish CPR not be performed, you must execute a DNR order and that document must be readily available to medical personnel. The execution of Power of Attorney for Health Care does NOT take the place of a Uniform DNR Advance Directive.
♦ Living Will. A Living Will is a declaration that you do not want life sustaining treatment to be provided in the event you have an incurable and irreversible injury, disease, or illness, judged to be a terminal condition by a physician.
If a designated agent under a Power of Attorney for Health Care is willing and able to act, he or she has authority make the decision as provided in the Power of Attorney. However, if there is no such agent, the Living Will directs the physician or other health care provider regarding your end of life wishes.
♦ HIPAA Authorization. The Health Insurance Portability and Accountability Act (HIPAA) limits use, disclosure, or release of your individually identifiable health information. As its name implies, a HIPAA Authorization appoints authorized recipients of past and current protected health information. It does not provide for decision-making abilities in these authorized recipients, but rather allows multiple family members or individuals to be involved in the conversation surrounding medical decisions.
♦ DNR/POLST. Illinois has recently adopted the POLST (Physician’s Order for Life Sustaining Treatment) paradigm and implemented a Uniform Do Not Resuscitate (DNR) Advance Directive. As with the old DNR form, the new POLST Uniform DNR Advance Directive form is printed on pink paper, and is a medical order requiring the signature of a physician. However, where the former DNR form allowed for only one directive, that resuscitation should be withheld for that individual in the event of cardiac arrest, the POLST form give the patient more control over resuscitation decisions.
The POLST form is a more comprehensive document than the former DNR form. The new Uniform DNR allows a patient not only to request that that CPR be withheld, but also provides an opportunity to affirm that CPR should, in fact, be initiated. It also includes statements regarding a wide array of life-sustaining interventions, such as IV fluids, antibiotics, a feeding tube, and artificial breathing. It provides a method for transferring a person’s treatment preferences into specific medical orders that are recognized throughout the healthcare continuum (home care, long-term care, during transport).
♦ Declaration of Mental Health Treatment. This declaration allows an individual with a mental health condition to control the types of future treatment in the event the mental health condition impairs the individual’s ability to make decisions on his or her own behalf. An agent, or attorney in fact, is appointed to consent to treatments as stated in the directive. The Declaration expires three years after its execution, unless an agent is acting under its authority, and thus this document must be revisited every three years.
Step Two. Communication of End of Life Wishes to Agent
Many of you will be presented with a Power of Attorney for Health Care by a hospital or other medical service provider, and you will execute the POA in a crisis mode. Fewer of you will sign a Power of Attorney for Health Care as part of the estate planning process. And a very few of you will engage your agent in a discussion detailing your end-of-life wishes, despite the fact that this is the most critical step in the process to ensuring that your wishes are upheld.
Simply naming an Agent does not prepare that trusted individual to take on the awesome responsibility that the agency thrusts upon him or her. You are, literally, putting your life in the hands of your Agent. As such, you have a responsibility to that Agent to provide him or her with the information needed to make an informed decision on your behalf when called upon to do so.
You are the only one who can define what is the “right” decision in any given situation. It is important that you take some time to think through possible medical situations and make those difficult decisions. Then, in order to ensure that your Agent makes the decision you would make for yourself in a similar situation, your feelings and attitudes regarding that situation must be communicated to your Agent while you are still able to make and communicate such decisions.
This discussion must go deeper than just telling your Agent to, “pull the plug.” As advances in medicine continue, there are many, many variations on end-of-life circumstances. Of course, you cannot possibly think of them all and inform your Agent of each and every decision in each and every possibility. However, by walking through various common situations, you will arm your Agent with the knowledge of your decision-making process, which will be essential information if the Agent is called upon to act.
Many people fail to have this discussion for a myriad of reasons. Some simply cannot bring themselves to think about death or the dying process. Others don’t want to be depressing, or worse, aren’t confident the individual they have designated can handle this difficult conversation. Finally, some just don’t know how to start the conversation or don’t have a background in the medical arena to begin to think about the possible scenarios.
There are resources available to assist you in having this necessary, and admittedly difficult, conversation. A simple Google search can provide a list of websites, YouTube Videos and worksheets to facilitate the discussion. Additionally, physicians, social workers, geriatric care managers, hospice personnel, and religious clergy can assist in initiating or fully facilitating these discussions.
There is no excuse not to have the conversation. Have it. Today.
Step Three. Decisions Revisited and Re-Communicated Regularly
Once you have the initial discussion with your Agent, your responsibilities do not stop there. This conversation should be revisited as time passes. Your wishes may change, and medicine will certainly progress. Continued communication with your Agent ensures that when the time comes, your Agent will make the decision you would want him or her to make on your behalf.
Again, there is no excuse not to have the conversation. Have it. Today. And again next year, and every other year on National Health Care Decisions Day.