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How do you define dignity, the essential element in hospice care?

By Patty Ayers

One of the core philosophies of hospice care is respect for the dignity of the individual. As I write this blog entry, I have to admit that I’m having a difficult time trying to express how I would personally define dignity.  Each and every day, I see how hospice patients and family members struggle to maintain dignity:

  • Recently, I spoke with the son of an elderly man who said that he knew that it was extremely difficult for his father to have others assist him, and that it was also very difficult for him to watch.  He said his father had always been an independent, strong man who prided himself on being able to function without assistance.  Now others have to feed and dress him.  I think many people would agree that having another person assist you with your personal care needs is probably at the top of the list of losses that diminish one’s feelings of being dignified.
  • I remember that, prior to my grandmother’s death, my mother went to visit her at the nursing home.  When she returned, she was very sad that my grandmother did not remember who she was.  This bothered her for many years, as she was also dealing with the guilt she felt by placing her mother in the nursing home in the first place. Both patients and their caregivers express that memory loss robs them of their dignity.  Imagine: Years earlier, you could remember the names and birth dates of each and every one of your grandchildren, and now you find it increasingly difficult to remember your own children’s names.
  • I asked one of my patients, Stanley, and his spouse, Jayne, if Stanley’s illness had affected their feelings related to dignity.  Stanley said that he felt undignified because he was no longer the breadwinner of his household, and that he missed going to work and providing for his family.  He said he felt “useless sometimes.”  Jayne said that Stanley gets “down sometimes because he is bored” and they bicker as a result.  What makes her feel undignified is that she does not know how to help Stanley with these feelings—this very competent woman felt unprepared.   Further, she said she was never one to bicker, but the stress sometimes caused her to behave in an undignified way.

But about a year ago, our medical director shared an article with the hospice team that he came across on NPR’s website, Dying: A chance to rewrite life, in which a psychiatrist discussed other reasons why someone could feel undignified at end of life. For example, some have regrets or define themselves by a negative aspect of their lives, instead of focusing on their entire lives and the good things they contributed throughout.

The psychiatrist found that “what people found most assaulting and annihilating was this idea that who they were would completely cease to exist after their death…If the idea of having something that will outlast even you matters for patients who are near the end of life, then we need to do something that will create something that will last beyond … the patient.” Dignity therapy, as the psychiatrist calls it, can include writing a memoir, recording remembrances, or sharing stories.

Caregivers can also benefit from the ideas presented in this article by helping their loved one remember the positive aspects of who they are, and the good traits and contributions they have made throughout their lifetime.  For example, I once had a patient who was a decorated World War II veteran.  This man had stated that he felt ashamed because he was an alcoholic, and he didn’t want people to remember him for his behaviors associated with the alcoholism.  It wasn’t until we reviewed his life and talked about the many good things that he was responsible for, such as being an excellent father and husband and his contributions to the war, that he was able to see himself in a more positive light.

Writing this blog entry has helped me to think about what makes me feel dignified.  I find myself asking these questions: “Does helping others contribute to my feelings of dignity?  Will I be able to allow others to help me when I need it, or will it make me feel ashamed or undignified?  As a caregiver to someone facing end of life, will I know what to say to my loved one if he is struggling with these feelings?  Will I, too, be impacted by someone else’s feelings associated with their dignity?”  I’m not sure if I can answer them now, but at least I’m beginning to think about them and may be a little more prepared when the time comes.

4 Comments Post a comment
  1. this is where my brother is at right now. i take care of him while he suffers from Parkinson’s. he has always been independent, although he is mentally challenged. today he refuses help and only asks me when he has struggled to the point of exhaustion. i have to sit and watch this when it would b so much easier to just go and give the help uninvited

    July 19, 2012
  2. Patty Ayers #

    Hello Terry,

    It must be very difficult for you to sit and watch without helping. I think it’s good that you resist the urge to help so you can give him his independence. Many would rush to help as it’s so hard to watch those you love struggle, but the satisfaction they feel when doing things for themselves is what it’s all about. Thanks for sharing.

    July 21, 2012
  3. Pat Kaba #

    Despite having been a Hospice Nurse for 15 years, I am now in the position of having had tyo place my Mom in a Locked Nursing Facility due to her rapidly declining Dementia nd her developing Psychotic episodes. I had promised my Mom when she was diagnosed that I would not put her in a facility but circumstances being what they are the decision has really been made by physicians; and despite my unhappiness and feelings of guilt I realize they are right. The unit my Mom is in attempts to preserve her dignity by encouraging her to do things by herself and using cuing and prompting, which does help her. I see her almost every night after work and on week ends to make sure I stay on top of her needs. It is very hard not to feel guilty and I realize she does not ever remember me being there daily, sometimes she does not know who I am…this is one of the most difficult things I have ever done.

    July 26, 2012
    • Thank you Pat for sharing your story and your feelings surrounding the difficult decisions you have made. No doubt you have made the right decision in ensuring that your mother receives the very best care in a safe environment. Our intellect and sound logic in decision making does not always match how we feel in our heart. Your commitment and dedication to your mother’s care is to be admired and I hope that you begin to feel more comfortable with the decisions you have made. Thank you again for being willing to share your experiences with others.

      July 31, 2012

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