Advance Directives Allows Family to Truly “Be At Ease”

Part of my job as a chaplain is to visit patients in the hospital. During a recent round I came upon Emil (not his real name), who was recovering from surgery to repair multiple injuries sustained as a result of a serious car accident.

Over the course of several days, he rebuffed attempts to talk about whether he wanted to complete an advance directive for his medical record with the hospital. “God will tell me when I need one” was his response. I would then shift topic and we would talk sports, or whatever else he was interested in sharing. His wife happened to be there on the last of these conversations.  She intervened to say she wanted him to have one, so she would know what to do in case something ever happened to him. After further resistance, I asked him why he was fighting the need to complete an advance directive.

Only then did he reveal that he had been his father’s healthcare agent and six months prior to his accident, he had had to fulfill his father’s wishes and “pull the plug”. In his mind he had killed his father and he didn’t want to burden his wife with that same kind of decision. This was a struggle he had not even been able to share with his wife. I stayed with him for a while, and told him that what he had shown was the greatest love and respect by fulfilling his father’s wish, and his responsibility as his father’s health care agent.

Later that day, his wife stopped to tell me that both she and her husband had completed their advance directives. The next time I saw them, the tension between them and within Emil himself had evaporated. They had achieved the peace of mind that only advance care planning can bring. They were “At Ease”.

Don Andler, Chaplain
Advocate Good Shepherd Hospital, Barrington, IL

My Dad Made it Easy

My father died at the end of May, 2013 at the age of 95.   He lived a life that took him to all the places he wanted to go, and do all the things he wanted to do. It was a very peaceful death for all of us.  He had thought through what he wanted at the end of his life, and how he wanted to die.  I would like to share our family story, and how this came to be.

In my parent’s early 60’s, my mom and dad wrote their will, Power of Attorney and Power of Attorney for Healthcare.  At the time there wasn’t much information about leaving instructions to your children on the care you wanted, or how you wanted to live the last weeks or days of your life. However, my mother had seen a letter in the newspaper which had been written by a parent to his/her children about this very topic.  My mother copied the letter on her typewriter, edited it to fit her situation, signed it, had it notarized and included it with her will. Dad copied the same letter and put it in with his will.

After Mom died at 87, we realized how important that paper had been in helping us fulfill Mom’s last wishes.  Mom had a sudden stroke and could not talk or communicate.  Her stroke came as a surprise, and we weren’t thinking clearly.  However, Mom had told us what she wanted in case something like this happened.  It was a comfort to all of us that Mom had shared this, because we did not have to guess at this difficult time.

On Thanksgiving Day in 2011, six years after Mom died, I came to the dreaded conclusion that Dad could no longer take care of himself in the home that he and Mom had built together.  Dad was not taking his medicine, was eating only one meal a day, and was unable to keep his house clean.  Dad lived on the Outer Banks of North Carolina, and did not want to leave the place where he had so many friends.  My brothers and I lived in Illinois and Massachusetts.

We realized we needed to find a new place for dad, and the house was put up for sale.  His possessions were sold or distributed amongst children, grandchildren, and great grandchildren.  We found a great place for dad to live – it was beautiful and the people caring for him were wonderful.  We all felt much better.  I became the Executor of his Estate, and managed everything from Illinois.

Eight years after my mom died, my dad passed away peacefully in his bed at the assisted living home.  The beauty of it was that dad and I had talked so much  since Mom died that I really understood what he wanted and was able to fulfill his wishes.  What’s even more special was that my brothers and I did not have one argument about anything related to caring for Dad, or his estate and its distribution because he had clearly outlined everything along the way.

As the Executor, I did not wonder about what I should or should not do. However, there were times I did doubt whether or not there was more I could do for him –  I would then go back to the documents he had written and everything would become clear again.

I know first hand how special this was. I am a Clinical Psychologist and have had many people come to me because of family conflict around caring for someone at end-of-life and the confusion and pain it can cause when people disagree about medical and estate matters. I am so very grateful for what Mom and Dad did for us in their last hours on this planet.  It created a great sense of peace amongst the four siblings as we moved forward because our parents had advance directives in place.

I have already completed my advance directives and shared them with my children. Have you completed this very important communication with those you love and who love you?

Dr. Barbara Grace, PhD, Psychologist, Family Therapist, End of Life Coach, Spiritual Advisor
Barrington Resident 45 years

Experience Gave Me the Courage to Begin Talking to My Dad

Four years ago my mother died from cancer. During her illness, we gathered as a family and talked about what was important to her and how she wanted care to proceed during her final days. At the time we didn’t have the benefit of any kind of guiding document to help us, but she was clear in her conversations, and we were able to fulfill her wishes at her death.

My father is 82 years old, and although he is in very good health, I know things could suddenly change. Through my work, I was made aware of the Be@Ease campaign and was introduced to the Five Wishes advance directive planning tool. After reading the document, I realized I needed to have a conversation with my Dad and begin the process of having him complete one for himself. Over the Christmas holiday I found the courage to broach the topic of completing his advance directives. I explained to him that I didn’t want to talk about his estate or the inevitability of his death, but I did want to have the same comfort we experienced with my mother’s death. He surprised me by admitting to feeling the same way – not wanting to talk about his death, but relieved to be able to start sharing with family his thoughts and desires for his final days.

My experience with my own Dad spurred me to invite members of Be@Ease to come and present to my friends and colleagues. I know many us have parents who are aging, and this is an issue we all need to address within our families. I encourage everyone to take advantage of the resources provided through the Be@Ease website to help in addressing this important issue.

Alexandra Bernardi
North Barrington

I am Grateful there is a Community Program like Be@Ease

My husband and I are first generation immigrants. We come from a culture where the expectation is for children to care for their parents as they age. It is different here, and I want to be prepared. I have tried to talk to my husband about what I want for myself at the end of my life, but this bothers him.

I am so grateful there is a Five Wishes document and a community program like Be@Ease where I can turn for help and encouragement. I am completing a form for myself in order to spare my husband the agony of making difficult decisions if I cannot speak for myself. I will have my husband and each of our children complete one for themselves as well. Because the Five Wishes document includes sections addressing the spiritual and emotional needs of a person, I am comforted to know our Indian culture and religious traditions will be observed at my death. I feel so strongly about the need for people to define their end-of-life wishes, I have taken this document to my church group and will have a Be@Ease representative come and speak to us.

Nalini

In the last three years I have experienced the deaths of two family members. Their final chapters could not have been more different.

BeAtEase_Post-it-01On a very fundamental level, each one of us has a sense for how we want the end of our life to play out. Whether or not that “end” is achieved depends largely on how well we have communicated our most basic wishes to others. In the last three years I have experienced the deaths of two family members. Their final chapters could not have been more different.

My mother-in-law died unexpectedly in 2010 at the age of 68. She had a life-long fear of doctors and hospitals and did not want to go to the hospital – ever. She also didn’t want to talk about death. In the end, she died in a hospital after extraordinary means were attempted to revive her. She died exactly the way she didn’t want to – because she didn’t document her wishes and the emergency medical community did what they were trained to do – try to save her life.

On the other hand, her mother, my husband’s grandmother was still living in the area at the time. She was in her 90’s, but healthy and living independently until she broke her hip six months after she buried her daughter. She was a remarkable woman who found the strength to get through surgery and rehab and return home. With the help of her grandchildren and home health workers, she was able to stay in her home, but she worried about being a burden, despite assurances from family. Unlike her daughter, Mildred had her “affairs” in order. My sister-in law was her health care agent, she had her DNR, she had a physician who made house calls (yes, really – still in 2013!) but she still worried that her life would be prolonged and she would die either in a nursing home or a hospital, neither of which she wanted.

Mildred was increasingly voicing her concerns in early 2012 and we knew the only way to provide her peace was to have her tell us her plan. As a family, we met with her and had her clearly tell us what she wanted at the end of her life. She was clear she didn’t want life extending measures of any kind, she wanted to be in her home and she wanted to be free of pain. She also shared with us what she wanted for herself after her death, and where she wanted her final resting place to be. We had her physician come so that he could talk to her about her wishes, and know what kind of care she wanted and didn’t want.

In January of this year, Mildred began to show signs of rapid decline. She was born in Kansas in 1918 and lived a disciplined life. You did not give up doing what you were “supposed” to do merely because you were tired. And believe me, she was tired. My sister-in-law finally made the call for a hospice evaluation and she was admitted on a Sunday evening in early March due to failure to thrive. The family members that were there with her let out a collective sigh of relief. Once hospice was on board, Mildred felt she had the permission she needed to begin the active dying process. She got the pain management she needed, she was allowed to stop eating and her end came within 10 days. She died in her home just shy of her 95 birthday.

In retrospect, we, as a family, ultimately completed an advance care plan without the benefit of the Be@Ease program.   Knowing about Be@Ease now, and being personally involved with this initiative has helped me make peace with her death, knowing we did all we could do to make her end of life what she wanted it to be.

I have completed Be@Ease’s 3-step planning process for myself. It is never too early to plan for your end. It brings a certain peace and clarity to the now.

Rachel C.
Barrington, IL

Colleague is Unresponsive in Emergency Room

Recently, someone I work with came down with pneumonia and was rushed to the hospital. By the time my colleague realized she needed medical attention, she was unresponsive in the Emergency Room.  The staff in the ER called our place of work to locate a family member and determine if she had a healthcare power of attorney.  Her family lived in a different state, and it was very difficult locating someone.  She ended up on a respirator for a while, but fortunately she did recover.  The whole situation brought home for me, the importance of getting my own wishes written down and communicated – not only to my family, but also my physician and the local hospital.  Be@Ease allows you to accomplish this critical task easily!

Sue,
Lake Barrington, IL

You are Never Too Young!

I applaud Bob Lee and Be@Ease for bringing this important topic to light. Before my 25-year-old single daughter moved across the country, she completed her Five Wishes and shared it with me. At first I was shocked because she’s so young but she was adamant that should anything ever happen to her, she wanted family and friends to know her wishes. It included everything from expressing her directives for medical treatment to gifting her few possessions, like her CD collection, to her brother. I think she’s ahead of her time in understanding just how important planning for the unexpected is for people of all ages. She certainly opened my eyes as has this community drive.

Marcia
Barrington, IL

I Have my Plan in Place! Thank You Be@Ease.

In August, 2004 my older sister came down with what she thought was a cold. After several days with no improvement, she made an appointment to see her doctor. At the doctor’s office she suffered a heart attack. Her doctor rushed her to the hospital, but she died on the operating table. She was 32 years old, and I was 17. No one in my family was prepared for her death.

This past August, my 49 year old aunt who had no prior health problems, experienced a stroke and was rushed to the hospital. The hospital staff got her stabilized and she appeared to be recovering.  Three days later she suffered a second stroke which left her in a coma.  My family was scrambling to kind any kind of paper work or documents that would give an indication of  how she would want to be treated in this condition.  Unfortunately, we had never spoken about it and our family had no idea. The damage from the second stroke was irreversible.  Two days later, without knowing of her wishes, it was decided to stop all treatment and to let her die. This was a very stressful experience for everyone in our family.

Several weeks ago, I heard a presentation about a program called Be@Ease. The program encourages people to think about and plan for what kind of care they want in case the unexpected happens. It also provides the tools to help people document their wishes for care at the end of their life and encourages people to share the document with others.

I am getting married in October of this year and it struck me that I needed to do this – for myself, for my future husband and for my family.  I am now an only child, and I will be responsible for making sure my parents wishes are fulfilled.   I called my mom and told her about Be@Ease, and that I wanted to talk to her about advance care planning.  She was relieved.   For a long time, she had wanted to talk to me about these issues, but she knew I wasn’t ready.  I was scared.

Now I feel like I have the clarity and the tools to complete this very important step in my life. I will celebrate my new life and my marriage knowing I have my plans in place.

Ebonie Williams,
Tinley Park, IL

Before a Crisis, Be Prepared

As an on-call chaplain at our local hospital,  I see many patients that are being prepped for surgery. More often that not, patient’s realize that they do not have a healthcare power of attorney or advance directives and need to put something in place.  With the surgeons, anesthesiologists, and nurses waiting – this is not the optimal time to be making these decisions.  It often contributes added stress at a time when the person needs peace of mind.

Appointing an agent to make health care decisions and articulating advance directives involves considering spiritual wishes as well as medical concerns.  These decisions need to be made before a crisis occurs.  This process needs to become a routine part of every person’s life so that forethought can be applied. We need to move away from the spontaneous, reflexive decision-making to a process that allows for deliberate, purposeful discernment, and time for the communication of our wishes to those we love and those who will provide our care.

Only when we can achieve this kind of planning and decision-making can we truly “Be At Ease”.

Don Andler, On-Call Chaplain
Advocate Good Shepherd Hospital

Be@Ease – Prompting Others to Act

I have family in the Barrington area and they told me about the Be@Ease Community Drive. What a great program. I completed the 3-step process and had my Five Wishes document lying on a table in the front room last week. My son-in-law stopped by and he asked if he could take a look. He was so impressed with the detail I’d been able to provide about my wishes. He said he was finally willing – for the first time – to “begin the conversation” with his mother. I spurred him on to action. Five Wishes makes it much easier to help entire families talk openly and honestly about final wishes rather than treating end-of-life issues as something unspeakable. Thanks to my family in Barrington who shared Be@Ease with me, I’ve been able to pay it forward.

Jackie
Northampton, MA