Late one afternoon, I received a call from a client’s family member who was beside herself. She had discussed advance care directives with me as part of her estate plan. When she went home and brought the subject up with her adult children, she was shocked by the reaction she got.
“Not only were they mad, but they were furious”, she told me. “To a one of them, they refused to discuss this, telling me that I wasn’t going anywhere and to talk about it was just foolish. I’m not sure I can really talk with them about this.”
This is not an unusual reaction to such a sensitive issue. Many family members, young and old, struggle with a discussion about advance directives. Yet, the best time to discuss this is when everyone is healthy and not when an emergency or health crisis emerges.
We all know life can change in an instant, someone may have a massive stroke or get into a car accident. To have this discussion at a time of crisis can result in choices that are made by emotions and not through rational thought.
One client told this story to me;
“I remember the morning I was at my parent’s house and dad was going
off to work at the textile mill. It was raining outside but it was much like any other day. Later that morning, I saw shadows 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 wondered? 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 dad, 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.”
“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 brother and I felt this was the best thing to do while our other sister accused us of wanting him to die because he would be a burden to us.”
“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 sooth 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, miracles are things of 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 I hear frequently where having advance directives in place may have helped a family stay strong during an emotional storm. Yet, many continue to avoid talking about the inevitable.
The discussion about end-of-life strategies can often feel uncomfortable and disturbing, both to the older person and to the family members. In fact, few discussions are as emotionally charged as this one. A meaningful end of life choice to one may seem incredibly selfish to another. Disagreements will occur as everyone tries to define what is best for all concerned. But what must be agreed upon is the fact that the family must communicate and work together to understand where such emotional responses have their origin.
As I stated earlier, this discussion is best coming long before the crisis is occurring, when additional emotions and stress are present. Such a conversation gives all concerned time to come to an understanding why a loved one has made this choice and what values and beliefs helped them come to this decision.
So, what’s the best way to broach the subject?
Probably the easiest way to start the conversation would be from personal experience. For instance, if Mrs. Jones, a neighbor down the street just died without any advance directives, you could use that as a conversation starter, for instance:
“The Jones Family sure have had a tough time with their mother’s death. What would you want in that case? Would you rather be in the hospital or at home if you had a choice? Who would you want around you?”
Seeing others go through great turmoil may spur some people to write an advance directive to ensure that they don't spend a long time on life support machines or cause more distress to their families.
If such a situation doesn’t present itself, perhaps a movie or a news story could prompt the question.
“Wow, what would you want in such a situation?” or, “I was at the doctors last week and saw an article about getting advance directives completed. Maybe we should investigate this more”.
Any plans for the future -- such as a loved one's retirement, a move to an assisted living residence, estate planning or updating of a will -- are natural ways to open the conversation. In fact, any kind of life events can be used to open the line of communications around this subject.
A wedding, the birth of a child or grandchild, a divorce, selling a home – all these things have implications on the family.
Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care. Please watch this short video on the importance of this.
Another way of starting the conversation is by asking about the kinds of treatments wanted if your loved one was very sick, unable to recognize family, unable to take care of himself or herself, or unlikely to get better.
But even if you try to be as gentle as possible about such preparations, some family members will still battle. Let’s talk discuss some of the reasons why.
First, it is the adult children of the seniors who often struggle with this
discussion. The reasons are many. They are forced to think about life without the one who gave them life, they are presented with and forced to acknowledge their own mortality and they must confront emotions that they are uncomfortable with.
In such situations, the feelings and thoughts present are often deep and complex and can lead to irrational decisions even when the facts presented to them are rational and indisputable. Impulsive choices made from emotions will haunt a family long after the services are over.
Another issue that frequently emerges is when an adult child has been the primary caregiver for the elder loved one and anticipatory grief is at times so strong and painful when discussing the time to stop treatment that it is nearly impossible for them to make rational choices. In such cases, counseling, specifically family counseling, can be quite helpful.
Denial is also a strategy that many family members adopt as a coping strategy to delay feeling the strong emotions that they are either unable to or unwilling to deal with at that moment. Keep in mind that adult children are busy raising their own families, going to school meetings to discuss behavior issues about their kids, may be facing a job loss or any number of stress inducing life events that compound the discussion of advance directives.
Denial helps them from talking about yet another crisis that will cause them considerable upset. Again, counseling could help them separate out the emotions and look at the issue of advance directives more clearly.
Another feeling which arises quite often is guilt. Those who feel they should have done more may be the most vocal about keeping the loved one on life support. Often, guilt can manifest by angry outbursts and even an unwillingness to see any other side of this issue. Again, supporting the family and counseling can help them work through this.
Family dynamics is also important. We know that some families have a hierarchy among children who each have their own perceptions of how they fit into the family framework. Each member must be treated as individuals, because each have their own personality, their own strengths, their own weaknesses and their role, both real and perceived within the family. This often requires patience and taking time to allow each person to process what advance directives mean and in what context this action is being taken.
So how do we get a family together to discuss these issues? By teaching and supporting healthy communications and this can be done through patience, understanding and at times, the involvement of a third party.
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.
Review the feelings that were discussed earlier in this blog. If arguments ensue, ask the family member what emotional phase they may be in (grief, denial). When we acknowledge our feelings and share them, others may develop a new way of viewing things.
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.
The experienced elder law and estate planning professionals at Connelly Law Offices, Ltd. can help you navigate this difficult territory. Give us a call at 1-855-724-9400.
Also, click on the Conversation Starter Kit below. This kit, developed by the Institute for Healthcare Improvement, walks you step by step through planning the conversation about advance care directives.
Next Week’s Blog: The connection between the use of benzodiazepines and Alzheimer’s Disease
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.