1. Fahlberg, Beth PhD, MN, BS, RN

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ONE OF THE THINGS I've come to realize in working with patients at the end of life is the importance of existential well-being, or one's feeling that his or her life has had meaning and purpose. People with limited time left want to feel that they've accomplished their life goals and that they'll leave something meaningful behind-a legacy that will endure after they're physically gone.


When people realize that they have only a short time to accomplish all they want to do in life, how do their priorities change? Where do they focus time and energy, especially when that energy is limited by advanced illness? And how can we as nurses help our patients experience existential well-being by helping them create their legacy?


My friend "Sally" (not her real name) was recently told that she has limited time left because of advanced organ failure. She described this news as "devastating." Despite her age (over 80) and progressive functional decline in recent years, she was always thinking about the future, setting and accomplishing new goals, and looking for opportunities to learn and teach others. The message that she had only a few months to live came as a shock to her.


As she came to a place of acceptance, Sally realized that she had a lot of unfinished business. She was determined to use the time she had left, while she can still think clearly and get around a bit, to create her legacy.


Living a full life

Sally has led a remarkable life. She traveled extensively for 40 years, learning about and collecting the textiles and textile-making tools of native peoples around the world. Her greatest concern now is ensuring that her collections will be used for others to learn from after she's gone. This is especially important for this woman who's lived a full life but who has no family to remember her, pass along her prize possessions, and tell her stories. She's devoted herself to creating this museum-quality collection with the goal of giving it away.


Nurses step in

When Sally got the bad news about her prognosis, she was in the hospital. She was discharged to a skilled nursing facility (SNF) so she'd be safe and have more help. And the people there treated her wonderfully. However, she was distressed thinking about all she needed to do to get her collections organized for donating and gifting.


For Sally's nurses and friends, the priority became getting her back to her assisted living apartment, where she could do what she needed to do to get her affairs in order. The SNF staff collaborated with the assisted living nurse and got her enrolled in hospice to provide additional support in her home. I was impressed at how all of the members of Sally's care team in the SNF, assisted living, and hospice worked together to help Sally get home quickly, but with the additional support and equipment she now needed.


The day after Sally returned to her apartment, I visited her. She was happy and at peace. Yes, she had a lot to do, but here among all of her belongings, she could work on what needed to be done, rather than just worrying about it.


Remember the importance of existential well-being, especially for those who have a limited time or whose future has suddenly changed. What can you do to facilitate, to advocate, and to ensure that these unseen yet very important needs are met? What can you do to help them leave a legacy? Resources are available online to share with patients and their families. For a few examples, see Helping patients create a legacy.


Helping patients create a legacy

Refer patients to resources like these to personalize their legacies.


* Delaware Hospice. Creating a legacy through scrapbooking and pictures.


* HPH Hospice. The HPH Hospice legacy program.


* Legacy


* Regional Hospice and Home Care of Western Connecticut. Legacy: Hospice patients can create special memories.