Let’s Have THAT Conversation
We are afraid to speak of death and dying in the USA, as if having this discussion will increase the likelihood of it happening. Evening thinking about death can sometimes be overwhelming. One commonality to the human race is we will all die -death is a natural part of life, and should be discussed and planned for. Retaining control over one’s life and ending life in a dignified state is a wish shared by all. A Living Will provides a written document outlining what your end of life wishes are including initiation, continuation, withholding or withdrawal of life- sustaining treatments. Detailed living wills also make known your burial/cremation wishes, plan your funeral service, choose your music and readings, and provide ideas for your Eulogy, thus allowing a glimpse of how you want to be treated when you are dying. We recommend the use of 5 Wishes as it helps start the conversation. It is not so much about the document, but the conversation and understanding that occurs when going through the steps to complete it.
Living Wills are necessary as advances in modern medicine have allowed doctors to prolong a body when the spirit of the person or what can be perceived as life has left. Families tend to think of this only when a relative is seriously ill, but frequently that may be too late as the person’s wishes are not known and decisions may be made that may not have been that person’s wishes. For those hesitant, I like to remind them it isn’t so much for them but to ease the minds of their loved ones who will need to be making these decisions on their behalf.
As Life Care Manager’s we have this conversation with our client’s on the initial assessment. Over 50% of our clients have not drafted a living will and of that 50% that have, most do not understand the implications of what they chose.
Things to consider when drafting a Living Will or reviewing a current one:
- Choose a Health Care Agent: This should be someone who knows you well, someone you have verbally shared these values with and have direct experience seeing you implement your philosophy on life. It should also be someone who is close by so they are able to help you when needed. Your health care agent (Medical Power of Attorney) will make decisions regarding your medical care when you are not able to. This is typically a spouse, but you want to also choose someone younger than your spouse as you may both need assistance from this person as you age. Be sure to ask and discuss with this person before choosing them in this role. This person should have strong patient advocacy inclinations and understand the medical arena. Health Care Agents (medical POA) frequently hire Aging Life Care Professionals to assist them in this capacity.
- Review the medical treatment desired when you cannot make these decisions and consider the implications of your decisions (use a nurse or other medical professional to help explain the consequences of these choices). For example, what does Do not resuscitate (DNR) mean? If I choose to be resuscitated, what are the implications to my quality of life if I receive chest compression’s and are placed on a ventilator to make me breath? What happens when a feeding tube is placed into someone who is in the end stages of life? What are the long term significance and impact on my life when choosing kidney dialysis? What purpose do blood products and IV antibiotic’s play in sustaining my life if I am nearing death?
- What would I like for comfort in the end of my life? We all know everyone want to be as pain free as possible but do they want to be bathed daily? Do they want their hair to continue to be styled and colored, do they want a massage, do they want music playing, what kind of music? This list can and should be very specific to the person who is completing their living will.
- Planning for the Final Arrangements: This is where you share your passions, sentient, and desires to assure your final arrangements are carried out according to your wishes. You can direct where you want services, what type (home burial, cremation, etc.), religious preferences, eulogy, specific songs or readings, you can even write your own newspaper notice and pick out your own picture.
We received a frantic call for assistance from Joe’s youngest child who was in crisis management mode and didn’t know where to turn. Joe’s wife had just passed away six months ago and dad was living alone, a diabetic, with kidney disease, who was found lying on the floor unresponsive in in his living room by a neighbor. Joe was currently not able to communicate his desires or needs, one side of his body was paralyzed and he was on a ventilator (breathing machine). Joe did not have a Medical POA or Living Will expressing his wishes. Doctor’s were refusing to speak to certain family members, family members had varying opinions on how aggressive to treat Joe, and there was significant disharmony among the siblings.
As you may have surmised, this scenario did not end well and the family could not agree to use our Life Care Management Services. Although deemed “brain dead” two of Joe’s children felt everything should be done to assure their dad had a “chance to recover”. Joe was left on the breathing machine, suffering skin breakdown, numerous infections, invasive, painful surgical procedures, feeding tube placed, and died in a hospital bed 40 days after his fall. At Joe’s funeral, the family stood divided into two groups – the two adult children and their families feeling they were glad they did everything, despite their dad’s poor quality of life at the end and the other two adult children and their families feeling tremendous remorse and sense of loss that their dad’s end of life was spent under what they perceived as in-human conditions. There is the possibility the family may remain divided the remainder of their life. This is why it’s important to be thinking about death ahead of time because it clarifies your life.
In the early stages of their mother’s Mary’s cognitive decline, Mary’s family called upon us to help them manage Mary’s life along with planning and project the needs for Mary’s future. When someone is diagnosed with any type of brain disorder (Alzheimer’s, Parkinson’s), this should be addressed without hesitation so the person can communicate their wishes while they are still capable. I lead the discussion with her family of five adult children and together, over time, we completed the 5 Wishes with Mary. Mary was in the initial stages of Alzheimer’s disease and still able to express her wishes clearly. All five children participated in this conversation and the recording of Mary’s wishes, including the older grandchildren. It was a wonderfully touching and enlightening experience for all the family to take part in.
Four years after, when she was nearing her end stages of life and no longer able to communicate her own desires, we frequently referred to this document and back to the conversations we had completing it. Her family was comforted knowing they were following through exactly as Mary had desired. As Mary progressed to having swallowing issues, frequently seen in the end stages of Alzheimer’s, there was never a question of placing a feeding tube as we knew Mary had been adamantly against this. We set up weekly music therapy and had a personal play list made on an IPod for the staff in the secure dementia unit Mary had been moved to, placed on her when she became anxious. Mary was an avid musician and music was very important to her life.
We continued to dye Mary’s hair red, painted her nails, and massaged her feet and hands up until the day of her passing. Her funeral was truly a celebration of life, with everything in place and pre-planned, there was no running around and making stressful guesswork decisions. It was very relaxed and selected family member’s read the readings Mary had chosen, played her favorite songs, read her favorite readings and poetry and the family felt they had done the best they could with their mother Mary. Although she was missed, there was a tremendous sense satisfaction and acknowledgement that despite a diagnosis of Alzheimer’s, Mary’s had a wonderful quality of life her last four years and although Mary no longer recognized her children or could verbalize her needs, her children were able to carry out her end of life wishes.
Thinking about death clarifies your life. Think of your living will as a final gift to your children or loved ones, it’s not just the paperwork but the conversation before, during and after the Living Will (advanced directive) is written. Have THAT conversation now!
If you have any questions or concerns about starting a Living Will, contact Holistic Aging or an elder law attorney for legal advice. The language used and requirements for making your living will legal depends on your state’s law. Learn more about your state’s laws on Livings Will and Health Care Powers of Attorney.
TEDMED Great Challenges 2013“Discovery Doodle” by graphic recorder Leah Silverman, depicting some of the challenges offered by program participants in coming to grips with end of life care.
With over 30 years of experience in the Care Management industry, Bobbi is viewed by her peers as a seasoned expert in the management of care with the aging and disabled population. The Care Management division of Holistic Aging, Options For Elder Care, has been assisting the elder and disabled population in Pittsburgh PA and surrounds to age well since 2002.