As I sat in the office with my 93-year-old assisted living resident Margaret, we discussed whether or not she should sign the living will that her son had dropped off and asked me to notarize. She looked at me with fear-filled eyes and asked, “Do you think I should sign it?” After about an hour of discussion about the pros and cons of having a living will, she agreed to sign it stating, “I’m signing this because I trust your judgment.” Although Margaret has had a very healthy and long life, she is afraid to discuss her wishes for the last chapter of life and the very mention of it visibly shakes her up.
Earlier in that year, Margaret’s sister Ann had passed away from complications of a stroke, so the family had experienced what it was like to have an incapacitated family member not be prepared with vital documents such as a living will, health care proxy and power of attorney. As an administrator of nursing homes and assisted livings, I have had the opportunity to counsel many residents and families on this very delicate topic. The fact I have discovered is this: Americans are afraid to talk about dying.
In Ann’s case, she believed that she would at some point pass away in her sleep, and despite education was resistant to writing down any of her wishes for the decisions that would be made when she neared the end of her life. When she did have a major stroke, she became paralyzed and lost the ability to communicate. The physicians and her family were left with no choice but to do everything possible to sustain her life, regardless of the quality (or lack thereof). She was unable to swallow, so a gastrostomy tube was inserted into her stomach, through which she was fed. Ann developed bedsores over time from immobility along with a series of infections. Her death was eventually brought about by complications from all of these events. She certainly would not have wanted to spend her last months in this way but since she refused to prepare, the people who were forced to make decisions on her behalf did the best they could.
The experience of watching their aunt go through this type of illness without being able to have a say in what medical choices were made for her inspired Margaret’s children to not allow this to happen to their mother. They sought out and consulted with an elder law attorney and had the appropriate documents drawn up. These documents included her specific wishes and one of the children was appointed to make decisions on her behalf if needed. In the end, the outcome for Margaret could not have been a better one. When her heart condition caused her to be so debilitated that she could not easily get around and had to spend much of her time in bed, the family utilized this prior planning to guide them through their decisions. They chose to bring on a hospice service to assist with her care needs in the assisted living and she was made as comfortable as possible. Since Margaret had chosen not to have any life sustaining treatment, her family members were all able to come and spend time at her bedside in her final days with a clear conscience and she was able to see her grandchildren one more time. When she passed away, she was pain free, in her own room, with her faithful cat by her side.
Working with the elderly population of the community and their families for several years has taught me the importance of planning ahead and having real discussions with family members about their wishes. As difficult as it seems, the more that we all communicate about these sensitive issues, the better off we will be in the end. Whether your loved one is nearing the last stages of their lives or not, this planning ahead is vital to ensure that we avoid the pitfalls that befell Ann’s family and countless others like them.