A complete and comprehensive estate plan should also include advance care directives as a part of long term care planning. This portion of the estate plan is crucial to ensure that individuals get the medical care that they want when they are unable to speak for themselves.
So important are these directives that a week-long event, called National Healthcare Decisions Day, will occur from April 16 to April 22 this year with the theme being “It Always Seems Too Early, Until It’s Too Late.”
The need to promote advanced care directives is certainly needed given our current healthcare system. As I have pointed out in previous posts, our population is aging, and advanced medical technology has transformed chronic or terminal illnesses into conditions that can create a long and slow road to the inevitable.
To add to this, the American family has changed dramatically since the white picket fence days of the 1950s. No longer are generations living in the same city, working at the same factory and sitting down to Sunday dinners together. Today, with the ever-changing job market, families are now scattered about the country and in some cases, throughout the world.
Because of this, seniors today are entering into long term care by themselves and in some cases, unable to express their final wishes. In fact, it is projected that by the year 2030, over half of Americans over the age of 85 will be suffering from dementia without any family support.
Without advance directives in place at a time of an emergency, family members are
left to guess at what their loved one would have wanted. This not only adds stress to the situation but can pit family member against family member as each try to decide what mom or dad would want.
So serious is this problem that federal law now dictates that medical personnel ask family members about these directives or if they would want to complete these directives when a loved one requires hospitalization. The question then needs to be asked, just how effective is this approach?
Not very, according to medical professionals and the patient’s families.
One medical provider told me that the intent of the law is great, but during a time when a patient is in crisis and the family is under stress, "who really wants to discuss Do Not Resuscitate orders?" And family members have the same concern. Therefore, such directives need to be discussed before a health crisis occurs.
But why is this so difficult to talk about? After all, we will all die, certainly no one will deny that. But it appears that both culture and beliefs play a part in putting off this discussion.
Research has shown that healthy people believe that they have no need to discuss this while others feel discomfort and sadness when broaching the subject. Some cultures even suffer from superstitions and believe that such discussions will bring on negative outcomes.
Whatever the reason, it is important to educate families about these documents and what they are for. So, let’s look at the tools of advance care planning.
Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about the individual’s preferences. These preferences are often put into an advance directive, a legal document that goes into effect only if the person is incapacitated and unable to speak for themselves.
Sometimes when doctors believe a cure is no longer possible and a person is dying, decisions need to be made about the use of emergency treatments to keep them alive. Doctors can use several artificial or mechanical ways to try to do this.
Some of the things that may be done include the following:
CPR – Most of us know that CPR (Cardiopulmonary Resuscitation) is used to keep the heart pumping blood when it is compromised. The truth about CPR, according to medical professionals, is that only 5% of those who have cardiac arrest outside of a hospital setting survive, even with CPR. Research also shows that CPR works best on younger patients and least likely to work on an older heart. In older people, using CPR can also lead to broken ribs and/or punctured lungs due to the force needed leading to other issues and pain. Electric shocks using a defibrillator can also be used.
Ventilator – For those who can no longer breathe on their own, a machine called a ventilator is used to assist them. With this machine, a tube is connected and inserted into the throat to force air into the lungs. The tube is uncomfortable which requires the patient to be kept sedated. If a ventilator will be required over a long period of time, a hole is cut into the throat in a procedure called a tracheotomy and the tube is connected there, which is more comfortable but takes away the ability to speak.
Artificial nutrition and hydration - a feeding tube or IV liquids are used to provide
nutrition when a person is unable to eat or drink. Although helpful when recovering from an illness or surgery, those near death can be made more uncomfortable by these interventions. Healthcare providers state that increased fluids increase the burden on failing kidneys and being fed through a feeding tube makes it nearly impossible for the body, which is shutting down, to digest the food.
Pacemakers and ICDs - Some people have pacemakers to help their hearts beat regularly. If you have one and are near death, it may not necessarily keep you alive. You might have an ICD (implantable cardioverter-defibrillator) placed under your skin to shock your heart back into regular beatings if the rhythm becomes irregular. If other life-sustaining measures are not used, the ICD can also be turned off. You need to state in your advance directive what you want done if the doctor suggests it is time to turn it off.
Comfort Care - Comfort care is anything that can be done to soothe you and relieve suffering while staying in line with your wishes. Comfort care includes managing shortness of breath; offering ice chips for dry mouth; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or constipation. Often this is done through hospice, which may be offered in the home, in a hospice facility, in a skilled nursing facility, or in a hospital.
Now that we have discussed measures that can be used to prolong life, begin to think about what you may want done. If you have current or chronic conditions, ask your doctor how these could affect a health emergency in the future. For instance, if you have high blood pressure or a history of artery disease, what do you want your family to do should this lead to a stroke?
If you don’t have any medical concerns right now, look at your family history as a clue as to what could be in your future. Talk with your provider about what you may want should you develop problems similar to other family members.
What also needs to be considered are your personal values. Do you want to be kept alive just for the sake of living or do you want to have a quality of life? What if an illness leaves you paralyzed and connected to a ventilator? What do you want?
Personal values are also about what makes life meaningful to you. If your heart stops, do you want to under-go life saving measures. For some, even if a health emergency left them confined to a room or a bed, they would be perfectly content reading books and gazing out the window.
Another thing to consider is that your decisions about how to handle life altering situations could be different at age 40 than at age 85. Or they could be different if you have an incurable condition as opposed to being generally healthy. An advance directive allows you to provide instructions for these types of situations and then to change the instructions as you get older or if your viewpoint changes.
Let’s look at specific documents that make up your advance care directive.
The Living Will – this document tells doctors how you want to be treated if you are dying or permanently unconscious and cannot make decisions about your treatment. In this document, you can say what procedures we discussed earlier you may or may not want.
Durable Power of Attorney for Healthcare – This document names a healthcare proxy, that’s someone who will make medical decisions for you when you cannot do so. The proxy, also known as a representative, surrogate or agent, should be someone who knows your values and wishes. Having a proxy helps you plan for situations that are unforeseen such as an automobile accident or other injury.
For those who have issues with putting their wishes in writing, a proxy is a good choice because it is someone they know and trust will make the right decision for them.
A DNR (do not resuscitate) order – This document tells staff at the hospital or nursing facility that you do not want them to return your heart to normal rhythm should it stop beating or beats unevenly. Without a DNR order, medical staff will make every effort to return the heart to normal beating. A non-hospital DNR will alert medical personnel to your wishes should an emergency occur outside the hospital.
A DNI (do not intubate) order – although less familiar than a DNR, this document tells medical staff that you do not want to be put on a ventilator.
Organ and tissue donation- allows organs or body parts from a generally healthy person who has died to be transplanted into people who need them. Commonly, the heart, lungs, pancreas, kidneys, corneas, liver, and skin are donated. There is no age limit for organ and tissue donation.
HIPAA Directive - HIPAA provides patient confidentiality by protecting your health care records, making them inaccessible by others unless specifically authorized by you. Unless you have executed a specific HIPAA Release/Authorization for your designated health care agent, or have included HIPAA Release Authority within your Advance Health Care Directive, that Trustee or Power of Attorney Agent may not be able to obtain this certification because your physicians may refuse to disclose it. This will delay them from handling urgent financial and business matters on your behalf.
Once you have put together your advance care directives, what comes next?
First, you want a set of directives to go to your healthcare proxy and alternate proxy, if you have one. Give one to your doctor and one to your attorney. Tell key family members where the copies are in case they need to contact someone in case of an emergency. And because there may be a chance that you may need to update the directives in the future, keep a list as to who has the copies.
It’s also important to review these documents on a regular basis. Although it is
recommended to do so every five years, I would recommend that every New Year’s Day, pull out these documents and review them. You might want to make adjustments if you receive a serious diagnosis; if you get married, separated, or divorced; if your spouse dies; or if something happens to your proxy or alternate. If your preferences change, make sure everyone who holds a copy gets an updated one.
What happens if you have an emergency with no advance care directives? In these cases, the state will assign someone to make medical decisions in your behalf. In most cases, it will be a spouse or a family member, but if you have no one, a proxy will be chosen who may not even know you or your wishes.
And remember this, an advance directive is used only if you are in danger of dying and need certain emergency or special measures to keep you alive but are not able to make those decisions on your own. An advance directive allows you to continue to make your wishes about medical treatment known even when you are unable to communicate it.
Here’s the reality, no one can predict what’s in our future and a person may never face a medical situation where they cannot speak for themselves, but having an advance care directive will surely give you and those you love peace of mind.
Our caring and professional staff at Connelly Law Offices can help you begin the process of putting together a plan that works for you and your family. Give us a call at 1-855-724-9400 for more information.
Next week, I will look at how you can start a discussion with those who are reluctant to develop these documents.
Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.