by Charlene Thurston, RN, ANP, Hospice Director,from the Spring 2001 Hospice Currents Newsletter
Recently, at the memorial service for my dear friend, Patti , I told the story of how she and her family faced and dealt with her last year of life, from the time she was diagnosed with lung cancer, to her death, just one short year later. Because so many people have called to say how much her story helped them think about how they might deal with terminal illness, I thought I’d repeat her story here, with her family’s permission, as a tribute to her and to all the patients and families who’ve gone through this very sad, yet also natural, and at times even awe-inspiring experience.

It is always such an honor for those of us who do this work, to be allowed into the lives of the patients and families we serve, during this most intimate time. Every day we see amazing acts of courage and love in the patients and families with whom we work. It is a particular honor for me, as Patti’s close friend and hospice nurse, to be able to share her story, as one example of such courage and love.

Patti  was a lively, engaging, dynamic, funny and intelligent woman, married to a loving husband, and mother of four children, aged 21 to 31, whom she adored. Just one year ago, at age 56, Patti was diagnosed after going to the E.R. to be evaluated for a “funny pain” in her upper right chest. Just like that. Fine one day. Lung cancer, which had already spread to other parts of her body, the next! Life-threatening illness can happen this way at times- without warning.

From the start, Patti handled her illness in a straightforward,open, and honest manner. She located good doctors, got a second opinion, and used all available resources to help her learn what she needed to know to make her decisions and to support her. After various discussions, she decided on her course of treatment -experimental chemotherapy, since nothing else really offered hope. She started out immediately, handled the chemo and a few complications with amazing ease, and used her fighting spirit to face this illness head-on, discuss it honestly with her family and friends, and to remain engaged in life.

Soon after she was diagnosed and had obtained her doctors’ opinions, Patti asked me to come over and speak to her whole family about cancer, what they could expect, and what might be the best way for them to proceed. She wanted her family to have the opportunity to have their questions answered and wanted to be sure they had support, both then, and as things progressed. She was feeling hopeful and optimistic at that time, but being as bright as she was, fully realized that things might not work out well. She was hoping for about 5 years, enough time for her young family to become a little more secure in their adult lives.

During this and later conversations, at Patti’s request, we discussed what I’d learned seemed to help patients cope best with life-threatening illness. Much of this Patti already knew intuitively, but some ideas were new to her. We discussed the importance of getting excellent medical opinions from doctors she trusted (which she had already done), and of making treatment decisions that offer the most hope for the risk involved; the importance of trying to keep all other aspects of her mind-body-spirit as healthy as possible- eating well, resting, exercising, meditating in one form or another, contemplating about one’s life and this experience, and tuning into and further developing the emotional and spiritual aspects, including working with a counselor who’d be capable of helping through this phase of life. We talked about the wisdom of putting business, legal, and personal affairs in order so that, in case anything happened, everything would be complete. And finally, we talked about the importance of then going on and living life to the fullest in each moment, nurturing herself, cutting out unimportant things that she found stressful, engaging in things that were enjoyable and meaningful, requesting and accepting help, and spending time with family and friends she loved.

So that was that. She and her family coped with the diagnosis, and she did amazingly well, living her life through all the treatments, including all the bumps in the road when tests showed a lack of much response to the chemo. She and her family spent more and more time together, and took the opportunity to have wonderful and meaningful talks, both one on one and together as a family. She joined our cancer support group, and was a wonderful contributing member of the group, both giving and receiving insights and support. Just recently, when the group was discussing how one finds the strength to keep going during dark times, she shared a “mantra” which she had developed for herself which was, “You just keep on keepin’on”. And that’s just what she did. She remained fully involved with her many friends until just a few weeks before her death, and she even applied for and took on a new job only a few months ago.

In February, about seven weeks before her death, it became clear that the chemotherapy was not working, and that there were no other promising options. Again we talked, and, after discussing the fact that it made no sense to take further chemo if all it would do was make her sicker during the time she had remaining, she made the decision to stop it. This was a difficult decision for her to make, since, in some ways, she felt that she was giving up and letting herself and her family down. However, as she thought about it more and discussed it with her family and her doctors, she became more confident that it was the wisest choice.

This decision, of course, put Patti and her family face to face with the reality that she would die. Her children returned home. Patti asked for another family meeting to discuss what they might expect during the dying phase of this illness. Again, we talked candidly and again they all handled it together in a loving and competent manner, supporting each other all the while.

She also arranged for Rev. Ted Anderson,whom she had known for years, and who also served as our Hospice Spiritual Counselor, to meet with them. Shortly thereafter, she and her family shared in making the plans for her funeral services and other things that needed completion. She made sure that she had special private time with everyone, and continued to guide them for their future lives. They spent a great deal of time together over the last weeks, and all participated in caring for her, as she lost strength. In this way, they gave her the greatest gift of all- the gift of being loved and cared for in her home, by those she loved. She in turn gave them the greatest gift of all – the gift of allowing them to take care of her, thus giving back to her so much of what she had always given them.

Patti did an enormous amount of growing spiritually throughout her illness, particularly during the last few months. Having used professionals, family, and friends as well her own internal resources, she gained much insight into her experience and into matters of life and death. During our last family meeting she shared with us that she had really come to see parts of life that she had not paid much attention to before, that she had really changed a lot as a person, and that she liked who she’d become. She did get impatient with some aspects of it. She didn’t like the weakening body and dependency, which led to a level of existence which she found tedious. But, after acknowledging her distress about that, she learned what I believe is one of life’s biggest lessons: to let go and relax into what is happening, rather than constantly fighting to control it. She really developed a great sweetness in her being during her final weeks, and a lovely serenity.

After having a wonderful few days with all her family, Patti died early Thursday morning on March 29th. After awakening her husband, Peter, and her daughter Kate with some restlessness, probably, in her own style, making sure that we were all there doing what she wanted, she died very peacefully and easily. Though we never really know why these things happen as they do, I really feel that she was able to let go so easily because everything that could be done had been done, and those she loved had been fully prepared, and all had had the opportunity to say all that needed to be said.

Patti’s family was her pride and joy, and during these past months, she delighted in every one of them and in whom they had become. Being the excellent parent that she was, she also taught her children one of the most valuable lesson of their lifetimes- how to face life’s most difficult obstacles with courage, honesty, dignity, grace, and lots and lots of love.

In the end, this dear friend, who was asking me to show her the way, really showed me the way. It was a true privilege for me to accompany her along this journey. I hope that her story may serve as her parting gift to us all, for, even in her dying, she continued to be a teacher and a contributor to her community, and her presence here will always be felt.

One of Patti’s favorite quotes follows. It sums up so well who Patti was. “When the time of judgment comes, it will be no excuse to say that you were far away, or that their language was strange, or their color was different, or I did not know their names. It will be asked of you and it will be asked of me: What did you do-you, the children of abundance-what did you do to help those who were hungry, and those who were sick, and those who were fatherless, and those who were homeless? What did you do?”

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

A Partnership in Caring

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