On April 16, Attorney RJ Connelly III, along with representatives from Continuum Care of Rhode Island, an organization that provides Hospice and Palliative care services for the terminally ill and their loved ones, presented an Advanced Directives workshop to residents of the John Clarke Retirement and Nursing Center in Newport, Rhode Island in conjunction with National Healthcare Decisions Day (NHDD).
NHDD is in place, according to their website, "to inspire, educate and empower the public and providers about the importance of advance care planning."
NHDD purpose is to bring together all those involved with seniors during end of life decisions, including the healthcare, legal and religious communities in order to benefit patients, families and providers. With that, let's talk about Advanced Care Directives.
Advance Care Directives are legal documents that allow someone to spell out their decisions about end-of-life care ahead of time. They give a way to tell a person’s wishes to family, friends, and health care professionals in order to avoid confusion if such a situation arises.
It’s not only physical health issues that need to be addressed with Advanced Directives. If a person expects problems with mental illness, this can also outline the individual’s health care choices in the event that they become seriously mentally ill and are unable to make health care decisions. This is called a mental health care directive or psychiatric care directive.
The Substance Abuse and Mental Health Administration (SAMHSA) just
released “A Practical Guide To Psychiatric Advanced Directives”. Click on this title of the document to view and download this information.
One of the questions that are asked frequently at such events centers around the importance of having them in place. At one meeting, a woman with a life-threatening illness stated, “Why do we need to discuss this now? My kids know what I want when the time comes.”
“But,” as Attorney Connelly points out, “when the time comes, can you depend on the children agreeing on the decision that you wanted - or will the children choose what they want?”
Joan, a friend from New Jersey, told of an unfortunate family experience that occurred because of a lack of Advanced Directives. It started with the death of her father.
“I remember that morning. I was at my parent’s house and dad had gone off to work at the textile mill. It was raining outside but other than that, it was much like any other day. Later that morning, I saw a shadow coming through on the window of the door, it looked like my brother who worked the night shift where dad worked, but what was he doing here instead of sleeping, I asked myself?"
"As I opened the door, his eyes were red like he had been crying and I
instinctively knew something had happened that was bad. Trying to keep a strong demeanor, he told us that dad had a heart attack and was in the hospital. It was like someone kicked me in the stomach. I never imagined it would be him, he was always so strong, always in charge, he was a rock. And he was only 51 years old, I told myself, how serious could this be?”
“Mom seemed to behave like it was no big deal. She walked slowly around the house, picking up things and saying she had to freshen up before going to the hospital. My brother, meantime, became very angry at how nonchalant everyone was. That’s when it hit me that this was serious. He saw it happen. We rushed to get ourselves together and go to the hospital. His behavior, however, was a harbinger of things to come.”
“We arrived there and heard the news from the doctor that he had little brain function due to lack of oxygen. Suddenly, a once strong family began to break down. Mom didn’t want dad removed from the ventilator, my sister and I felt this was the best thing to do while our brother dug in and accused us of wanting him to die because he would be a burden to us. His accusations also included us wanting his money. It was hurtful and something I can never forget.”
“Hours turned into days as dad was kept alive on life support, we fought and argued about what dad would have wanted, and my mother, trying to be a referee while dealing with the pending loss of a love she first met in high school turned to alcohol to soothe the pain. Day after day we visited him to watch his chest rise and fall with each puff of the ventilator. We talked to him but of course there was no response. We hoped that one day he would open his eyes and it would be a miracle. But, I learned that miracles only happen in movies and he died shortly thereafter.”
“We had the funeral and hoped for the best but the rift in the family never healed. Mom used alcohol for the rest of her life, almost as a way to replace my father, and she eventually died from cirrhosis, prompting another family battle. Now, I’m certainly not saying that having dad’s wishes in writing would have kept the family together, but it sure would have eased the stress on everyone involved and given him the dignity he deserved at the end. I know he would not have wanted things to turn out they way they did.”
This story is one of many we frequently hear where having advance directives in place may have helped a family stay strong during such an emotional storm. Yet, many continue to avoid talking about the inevitable.
Let’s look at exactly what makes up advance care directives.
A LIVING WILL
This document is designed to control some future health decisions if and when
that person is unable to make decisions for themselves. The person must have a terminal illness (cannot be cured) or be permanently unconscious (usually called a “persistent vegetative state”). Although these laws may vary from state to state, living wills are usually honored.
A living will also describes the type of medical care a person may or may not want given the situation. It can describe what measures may be taken to prolong life such as the use of feeding tubes, dialysis or breathing machines.
The living will is a formal document that must be written or written under the direction of the patient and signed by them as well. Most states require the document to be witnessed and notarized, however the witnesses usually cannot be a spouse, potential heirs, the patient’s doctor or employee of the healthcare facility.
As alluded to earlier, there are some things that need to be addressed in this document such as:
The use of equipment such as dialysis machines or ventilators
“Do Not Resuscitate (DNR)” orders – instructing medical personnel not to use CPR if breathing stops
The use of a feeding tube – do you want to be given fluid or nutrition if there is no hope of recovery
Do you want treatment for pain, nausea or other symptoms even if you aren’t able to make other decisions (this is called “comfort care” or “palliative care”)
Whether you want to donate organs or other body tissues after death
It is also important to understand that by not choosing to have aggressive medical treatment doesn’t mean you are refusing all medical care. A person can still get antibiotics, nutrition, pain medicine and other treatments. It’s important that you make clear exactly what you want.
A living will can be revoked at any time and in some states, they may be automatically voided after a certain period of time. Make sure you know what the laws in your state are around this issue.
Although we mentioned earlier that in most cases, doctors will honor a living will from Rhode Island if a person has a heart attack in Florida, however Attorney Connelly does recommend creating separate living wills if you spend a lot of time out of state (for instance, many residents from the Northeast will spend winter in Florida).
A living will is much more limited than a healthcare power of attorney and although both apply only when the person is unable to make their wishes known, a living will only takes effect if the person is terminally ill or in a vegetative state. The bottom line is that a person cannot possibly imagine every health issue that could arise which is why people need a health care power of attorney also.
HEALTHCARE POWER OF ATTORNEY
The Healthcare Power of Attorney, also called a Durable Power of Attorney for Healthcare or Healthcare Proxy, allows another, who you designate, to act as your agent (the attorney in fact) and make healthcare decisions for you. The agent you choose must act consistently with your desires as stated in this document or otherwise made known to others. This document allows your agent to give your doctor consent around treatment options, including stopping all forms of treatment.
Even if this form is in effect, you still have the right to make decisions for yourself as long as you have the ability to give informed consent and at no time can treatment be given to you over your objection. Healthcare that is necessary to keep you alive may not be stopped or withheld if you object at the time.
This document gives your agent authority to consent, to refuse to consent, or to withdraw consent to any care, treatment, service, or procedure to maintain, diagnose, or treat a physical or mental condition. This power is subject to any statement of your desires and any limitation that you include in this document.
A court can take healthcare decision powers away from your agent if they:
Authorizes anything that is illegal
Acts contrary to your known desires, or
Where your desires are not known, does anything that is clearly contrary to your best interests.
Unless you specify a specific period, this power will exist until you revoke it. Your agent's power and authority cease upon your death except to inform your family or next of kin of your desire, if any, to be an organ and tissue owner.
FINANCIAL POWER OF ATTORNEY
It’s also important to explore a financial power of attorney because of the
complications that can arise in such situations. A financial power of attorney not only gives the "agent" or selected individual power over your finances but can also include specific directions on how the finances need to be handled.
This gives peace of mind to all concerned during such a stressful time and ensures that the financial wishes of the individual are being carried out.
Some of the tasks that are handed by a financial power of attorney are:
Buying, selling and maintaining property
Taking care if taxes, including property and federal, state and local income taxes and filings
Managing all accounts, including savings, retirement and stocks/bonds
Paying medical expenses including health insurances
Accessing and monitoring financial records in order to avoid and financial abuses
Transferring and selling assets
Managing day to day expenses such as paying utilities, auto payments, etc.
It’s also in the best interest of the individual to seek an “agent” who is a fiduciary. A fiduciary owes to the individual the duties of good faith and trust and is bound ethically to act in the individual's best interests.
The financial power of attorney stops upon the death of the individual, so it is imperative that an executor is also named who will deal with financial matters at that time.
Other ways that this type of power of attorney can be terminated are:
If the agent named is not available (which is why alternates need to be named)
The document is invalidated by the court
The individual revokes it
DO NOT RESUSCITATE ORDER (DNR)
A do-not-resuscitate (DNR) order can also be part of an advance directive. Hospital staff try to help any patient whose heart has stopped or who has stopped breathing. They do this with cardiopulmonary resuscitation, including using a defibrillator.
A DNR is a request not to have CPR if your heart stops or if you stop breathing. You can use an advance directive form or tell your doctor that you don’t want to be resuscitated. Your doctor will put the DNR order in your medical chart. Doctors and hospitals in all states accept DNR orders. They do not have to be part of a living will or other advance directive.
Other possible end-of-life issues that may be covered in an advance directive include:
Ventilation – if, and for how long, you want a machine to take over your breathing.
Tube feeding – if, and for how long, you want to be fed through a tube in your stomach or through an IV.
Palliative care (comfort care) – keeps you comfortable and manages pain. This could include receiving pain medicine or dying at home.
Organ donation – specifying if you want to donate your organs, tissues, or body for other patients or for research.
Medical/Physicians Order for Life Sustaining Treatment (MOLST/POLST))
But what happens if you have a DNR order, but you have a heart attack or
stroke in your house? The local EMTs are required to follow that DNR right? Surprisingly, they do not have to.
This is when a form called a MOLST/POLST (other names in different states) comes into play.
The MOLST/POLST is a medical order that is similar to a prescription that tells other health professionals about a patient’s care. The MOLST/POLST is based upon an individual’s right to accept or refuse medical interventions, including those that may very well be lifesaving.
Obtaining a MOLST/POLST requires a discussion between the medical provider, the family and the individual. It may also include the healthcare power of attorney. The issues discussed include:
The individual’s current medical condition
What is likely to happen next
The individual’s goals and values
The risks and benefits of possible interventions
Once this takes place, the MOLST/POLST form is completed by the medical provider and signed by both the clinician and the individual. This form then stays with the individual and is to be honored by health professionals (like EMTs) in any clinical care situation. If the individual is homebond, it is suggested that the form stay on the refrigerator for providers to find if an emergency call is made.
The MOLST/POLST form is not an advance directive as it is a medical order that is designed to be carried out based on the individual’s current medical condition.
Advance directives, including healthcare POAs and living wills, are legal documents that are effective only after the patient has lost capacity. The MOLST/POLST form, on the other hand, is a medical document signed by both the clinician and the patient, and is effective as soon as it is signed, regardless of a patient’s capacity to make decisions.
One question that we have been asked is whether the MOLST/POLST form
can be voided. The answer is yes. The individual can request and receive medical treatment at any time no matter what the MOLST/POLST form states. And because health conditions may change over time, an individual can ask that a new MOLST/POLST form be developed with a different set of instructions.
To find out if your state has such a form and what it is called, click on the picture of the map and you can find out.
A HIPAA Privacy Rule Authorization gives health care professionals and health insurance companies your explicit permission to release protected health information about you to designated parties.
Without this authorization, doctors and other health care providers cannot legally share your medical information in ways that violate the Privacy Rule of HIPAA. (Note that they do not need explicit authorization to share information about you with other medical professionals who are directly involved in your treatment or with family and friends).
However, where such forms are needed is in cases where a relative or “agent” needs to gather health information from providers, medication information from pharmacies or other health care documents that may be needed by providers or a care facility.
You may want to sign a HIPAA Authorization to give your health care providers the right to disclose your medical condition to a particular party. An example would be your adult child so he or she can discuss your health with a physician or an attorney if he or she is a guardian or needs access to the medical records for legal reasons.
You Have Them, Now What?
So now you have everything in place, what do you do with them? Here are some suggestions:
Put the originals in a safe, but accessible, location and make sure others know where to find them
Give a copy to your primary care doctor or specialist
Give a copy to your healthcare agent/proxy and any alternative agents you may have chosen - keep a record of who has them
Do not "just fill out these documents" and forget about them. Remind your family from time to time about your wishes. Not clearly communicating your wishes frequently and consistently can lead to guilt among family members when the advance directives need to be used
Carry a card in your wallet indicating your wished and who may have copies of your advance directives
Carry a copy with you when you are traveling
And, like other advance planning that you may have made, it is important that you check your advance directives on a regular basis. For instance, your original "agent" may have moved away, your health issues may have changed or you may have had a change in what you desire.
Getting the Family On Board
So now that we know the forms of an advanced directive, how do we start the conversation? Here are some tips on this subject:
Set ground rules for the discussion. Avoid using certain words and phrases that are emotionally charged and when discussing feelings, own your own. For instance, it is alright to say, “When we discuss this subject, it makes me really sad.” Don’t say things like,“It sounds like you don’t really care!” Such statements become accusations and opinion loaded. You really don’t know what someone else feels and it is unfair to make such a statement. It leads to anger, frustration and guaranteed not to accomplish anything. What you want to accomplish is constructive, open and honest conversation while acknowledging each other’s feelings on the subject.
Don’t try to resolve the issue in one family meeting. People will need time to digest the discussion and deal with feelings that arise. If everyone is open and honest, hold each meeting at a different family members home. However, if there is a family member who holds strong opinions, it will be in everyone’s best interest to hold the meeting in a neutral location. Choose a local park, beach or coffee shop.
Everyone needs to talk. Because a family member says nothing doesn’t mean that they have nothing to say. Prompt them and support them in sharing their feelings. If not, you may face resistance from them or passive-aggressive behaviors later. Everyone needs to talk and be heard.
Choose a facilitator. In group counseling, a facilitator is usually chosen that can guide the discussion. The same needs to happen here. At each meeting, someone should serve as the facilitator and act almost as a referee, allowing others to disagree and state their opinion, but it must be done respectfully and without personal attacks. And always remind those participating to stay focused on the goal.
Call a professional. If feelings are so deep that you feel such a family meeting would collapse into a screaming and shouting match, you may be best to bring in a professional. Social workers, mediation specialists and care managers are trained to help guide such a discussion. It is not a sign of weakness to ask for help, just the opposite. It shows that you recognize the importance of solving the issue without the conflict.
There really is nothing more stressful and emotional than discussing the loss of a loved one however there are ways to handle this that may end up making the family closer than ever.
And just one final note of Advanced Directives, no health care facility, health care professional or insurer can force you to sign or agree to an advance directive as a condition of providing treatment or insurance. Making this choice is your decision and yours alone.
If a health care facility, health care professional or insurer refuses to follow your advance directive, they must tell you or the individual responsible for making your health care decisions. They must continue to provide care until you or your decision maker can transfer you to another health care provider who will follow the orders contained in your advance directive.
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.