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Gifts From the Grave:
Lessons Learned for Living Well
by Lisa Marraro Cole, MS, FNP

Originally published in EXPLORE (New York, N.Y.) May 2005, Vol. 1, No. 3

Article has been updated since original publication. 

Often expected to work institutional miracles although under resourced, most hospice and palliative care nurses excel in meeting consistently intense and demanding clinical and human challenges. They do so by staying focused and being grounded, highly accountable, responsive, and empathetic. With time and experience, they often master the art of advocacy, and through developing a capacity for "organization-with-heart," they navigate very complex institutional, systemic, cultural, and societal waters. Nurses are present to patient and familial wounds; the sights, sounds, smells of chaos and beauty; gladness and grief; intimacy and numbness. Our guest author today distills years of nursing experience into a very few words that can be shared in classrooms, homes, and clinics. It is clear that she not only knows of what she speaks, but, having died many times to that which is not fruitful, she separates the essential from the nonessential and, in so doing, is renewed and full of life. Isn't this an ultimate demonstration of integration and embodiment? –Therese Schroeder-Sheker, The Chalice of Repose Project. 

When people ask what I do for a living and find out that I work with the dying, they often turn and run, but some do come closer and begin to speak about their losses. In a culture that shuns the aged, the infirm, and the disabled, for many of us, it is absolutely alarming to consider death, especially one's own. We are often so ill prepared. 

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What a contrast to the mentality in Mexico, where I have observed Dia de los Muertos (Day of the Dead) events. There, every November 1 and 2 (All Saints' and All Souls' Days), the dead are remembered, celebrated, and publicly called on for guidance. Revelries abound in the cemeteries and the streets. Shrines are erected, and special breads (pan de los muertos) and foods are prepared. People are joyful and reverent as they recount memories of their deceased loved ones.

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With courage, clarity, and commitment, we, too, can become more comfortable and capable in our dealings with death, and we will live more fully and purposely for having made this effort.

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I have found that the three areas that cause the most grief at the end of life revolve around final arrangements, relationships, and how authentically a life was lived. People – both the dying and the living – grieve tremendously and suffer deeply over what they did not attend to these realms. This article discusses each topic and offers suggestions and resources (some of which have been updated since this article was originally written) that encourage living and dying well.

1. Get your affairs in order

How obvious, but how easy to not do! Attention to the following items now will ensure much greater ease during the chaos that often ensues during a health crisis.

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  • Complete your advance directives. Document what your wishes are for your healthcare should you be unable to advocate for yourself. Be sure to include your preferences for resuscitation, tube feedings, antibiotics, intravenous fluids, medication restriction, treatment restriction, ventilation, hospitalization, and organ donation.

  • Choose a Durable Power of Attorney for Health Care (DPOAHC), someone you can trust to uphold your advance directives and make decisions for you should you become unable to do so for yourself.

  • Educate yourself and loved ones about hospice or supportive care prior to needing such services. Often, people wait until just days before their death before even querying. Palliative care physicians, nurses, music-thanatologists, social workers, chaplains, aides, homemakers, and volunteers are at the ready to help as soon as a diagnosis of terminal illness with a less than 6-month prognosis is given. Patients and families benefit greatly from the improved comfort, enhanced quality of life, and financial assistance afforded once hospice is on board. Bereavement services are available for support afterwards. Know that, in many communities, you do have a choice between a nonprofit versus a for-profit agency; this distinction is important because care decisions sometimes are made dependent on the bottom line. 

  • Determine whether a will is the right legal vehicle for you. Probate is often a costlier procedure than if your estate is administered through a trust. Consult an estate attorney for counsel on this matter.

  • Consider the moment of your death. Where do you want to die, how, and with whom? What do you want to have happen to your remains? There are home funerals, family-directed ceremonies, and green burials available that offer personalized, sacred, and less expensive options to the usual cremation and funeral practices. 

  • What do you want to live on after you? Writing your memoirs can be a transformative and healing gift to yourself and your survivors. An ethical will, meant to pass on values to your loved ones, might be especially timely, not just at the end of life, but as major life events such as betrothal and children occur.

2. Clean up your relationships

Is there someone in your life you need to forgive? Are there upsets that still need resolution? So often, patients are not able to finally let go and release into death until they have made their peace with those whom they hold grievances. 

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In his book, Dying Well, palliative care physician Ira Byock speaks to the developmental tasks of the dying and describes five thresholds: Please forgive me, I forgive you, Thank you, I love you, Goodbye.

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However, in my experience, these five phrases apply to the living as well! What if we were to daily live our lives complete in our communications? If we went to bed each night knowing that if we died tonight, we would have already said all that we needed to? What if all our connections could be compassion based?

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For many, a move toward such reconciliation may seem more frightening that the reality of death itself. So much of our communication, with each other and ourselves, is violent. Too rarely do we encounter or engage in empathy. Marshall Rosenberg, PhD, developed Nonviolent Communication (NVC) to promote the clear and respectful exchange of feelings and facilitate solutions to conflict that meet everyone's needs. For more information on this life-enriching language, visit cnvc.org.

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Sometimes, direct contact with the person in question is not possible – it may cause more harm than healing. In this situation, a personal ritual designed for closure may be a more skillful way to reconcile. Seek pastoral care with your rabbi, minister, priest, or spiritual director or create your own form of forgiveness and give yourself the opportunity to mourn and release.

3. Live your life intentionally, meaningfully, and consciously

  • Ask yourself: How am I living right now? What is my life truly about? What value, contribution, and legacy am I offering as I spend my days?

  • Elizabeth Kubler-Ross, MD, death and dying pioneer and author of On Death and Dying, states: "When you make your transition, you are asked two things basically: How much love you have been able to give and receive and how much service you have rendered?"

  • Schedule time for retreat. Rabbi David Cooper espouses that the "minimum daily requirements" for nurturing your soul are as follows: One hour/day, one day/week, and one week/year. Be where you can rest, restore, renew, and reflect. You may find therapist and minister Wayne Muller's Sabbath and How Then, Shall We Live? books to be especially helpful in supporting you in this process. 

  • While quiet, write your epitaph or obituary. Ponder what changes you may need to make for you to lead the kind of life you wish to be remembered by.

  • Formulate a life plan based on what you have deemed to be most important and delete the rest. Set up regular intervals to evaluate your commitments.

  • Begin and end your day with your intentions.

  • Practice gratitude.​

 

Although you may find it daunting to even consider approaching these three tasks, imagine what a relief it will be finally to embrace them! Try framing this endeavor as a 3-month project: turn your attention inward during this time and allow all of your freed up energy to aid you in accomplishing these goals. Then, perhaps as Geradine Page in Truman Capote's film A Christmas Memory did, you, too, will be able to look up into the sky and the sun, smile, and say: I could die with today in my eyes.​

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