Category Archives: Death and Dying

Advance Directives

“…living close to physical death (our own and that of others), we come to recognize death as a natural and often welcome event. Yet another movement of growth into the fullness of the knowledge of God.”
Margaret McNeill, 1990, PYM Faith and Practice, 2002

If you are 18 and over and wish to have a say about what may happen to you if you become unable to speak for yourself, you need Advance Directives. Advance Directives include a Health Care Proxy, Living Will, Power of Attorney, and a will. Towards the end of life, one needs a Do Not Resuscitate (DNR), and some states may have other forms as well.

A Health Care Proxy allows a person to choose whom they want to make their decisions for medical care when they are not able or no longer want to. It also provides space to say exactly what those decisions would be. Your state may have one online. It allows you to make your choices and remain in control. Parents will not necessarily be deferred to by doctors for an adult child (18 and over), especially if the parents are divorced and not in agreement.

Living Wills also are tools to express your medical decisions, but they do not have the power of law behind them that a Health Care Proxy does. They do give additional opportunity to be clear about your wishes. They can also be found online.

A Power of Attorney (POA), or a Springing or Durable POA covers non-medical decisions that may need to be made when you are no longer able, such things as paying the bills, choosing a long term care facility, doing the taxes. Be sure that your form is the most current one accepted by your state. A springing POA is one that only goes into effect when you no longer can take care of business yourself; a durable POA remains in effect when you are no longer able. Some states websites provide them online, or they may be purchased at a business supply store.
Wills are not magic: doing one will not make you die, despite what many Friends have only half jokingly told ARCH program facilitators. Children will need someone to care for them, if the parents are no longer able and you want to be the person choosing, rather than having the decision made by the court, or by a family argument. Wills can clearly make your wishes known about what to do with the stuff, the cash, and who or how that is decided, and thus prevents those ugly family fights that result in siblings becoming estranged. If you do not have a will the state may decide how much of your estate goes to your children and how much to your spouse. The three previous items do not need a lawyer, a will does.

DNR and other state forms are available to complete towards the end of life. Your state’s Do Not Resuscitate form is online. It prevents you from having your heart or lungs restarted when you no longer want that to happen. In many states, even if you have a DNR, when someone calls the paramedics they will, by law, resuscitate you. If this is not what you want, ask the people who are likely to be with you just to hold your hand. Your state may have other forms you can fill out with your doctor telling what treatment you do and do not want at the end of life, and the doctor signs and dates each section. Having this conversation with your MD can help your decisions and informs your doctor, since these directives can be enforced by law.

A File of Life is a plastic bag with a red sticker on it kept on the refrigerator door, and a matching red sticker goes on the front door. Inside the bag is a copy of your proxy statement and a form with all your medical information. Paramedics will recognize the sticker on the door and will grab the bag and take it with you to the hospital.

Once you have filled out all of these, give a copy of each, except your will, to your family, your health care proxy and all your doctors and discuss what exactly your decisions are. Your lawyer keeps the original of your will. Do not keep any of these in the safety deposit box, which will be sealed at your death, preventing your loved ones from being able to get them for several weeks.

Consider having a conversation in your faith community about planning for very serious illness or the end of life. Exploring these issues in a supportive environment can help people address their values and emotions while making informed decisions. Both NYYM and PYM offer free Advance Directives workshops to Meetings in which we provide such forms, discuss the issues and do a whole lot more. Friends find this workshop to be actually enjoyable as well as informative, and not gloomy. To schedule a workshop for your Meeting contact your Yearly Meeting office.

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LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. Articles from this site will open in the same browser window/tab. Articles from other websites will open in a new window; when you are done, simply click out of that window and you will be back on this site.

More articles on this website:

End of Life Decision Making and Quaker Testimonies
Green Burial and Other Options

Other Articles/Links:

Minute from Northern Yearly Meeting about preparing for death
Download your state’s Advance Health Care Directives
Legal Guide for the Seriously Ill

Sources/Further Reading:

Hank Dunn, Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness, Fifth Edition (ISBN 978-1-928560-06-7)

Elizabeth Gray Vining, Facing One’s Own Death, 1979, Spoken Essay for the Committee on Worship and Ministry for Philadelphia Yearly Meeting.

Lucy Screechfield McIver, A Song of Death, Our Spiritual Birth: A Quaker Way of Dying, Pendle Hill Pamphlet 340, 1998, Pendle Hill, Wallingford, PA.


“What we must do…with God’s help, is to accept sorrow as a friend, if possible. If not, as a companion with whom we will live for an indeterminate period, for whom we have to make room as one makes room for a guest in one’s house, a companion of whom we shall always be aware, from whom we can learn and whose strength will become our strength. Together we can create beauty from the ashes and find ourselves in the process.”
Elizabeth Gray Vining, 1952, Quoted in PYM Faith and Practice, 2002

Grief, the intense sadness that comes after a loss, manifests itself in many forms, is different for everyone, and often impossible to put into words. Though grief is universally experienced, it can be isolating. Reminding us of our aloneness in how it affects each person differently, it is something that one must go through in one’s own way. It can numb, enrage, or level a person all in one day. It may challenge our faith. Grieving persons may experience anxiety, depression, fear, physical aching, and may feel blindsided, experiencing an intensity of feeling they have never experienced before. Some may experience giddiness, or other seemingly inappropriate emotions. Those who have grieved and who work with grieving people agree, there is no way around it, only through it.

In 1969, Dr. Elizabeth Kubler-Ross identified five stages of grief:

  1. Denial: A sense of unreality, this cannot be happening. One may feel numb, unable to process emotions. This may be a way of helping us cope with loss without being completely overwhelmed.
  2. Anger: One has a sense of unfairness. A person may become angry at the one who died, oneself, family members, or doctors.
  3. Bargaining: This may take place before the loss. Bargaining with God, with family members, with one who is leaving… “I’ll be a better person if…”
  4. Depression: Overwhelming sadness, frustration, hopelessness. People may experience changes in sleep patterns, eating habits, even thoughts of suicide. Always refer to professional help if thoughts of suicide are expressed or suspected.
  5. Acceptance: The loss is accepted as permanent, and thoughts turn to moving on and finding the good in life again. One realizes that life must go on and begins to take steps toward living again. This does not mean the loss is forgotten or that sadness is gone for good, but that we can cope and move forward with living. Some people may become resigned, rather than accepting. This is not the same and may indicate that the person needs further help in coping with their loss.

Though stages of grieving have been identified, not everyone goes through these stages in the same pattern. How then, can we help others or ourselves through the grieving process?

Supporting a Grieving Person:

  • Do not expect people to grieve a certain way, follow a specific pattern, or stick to a timeline of grief. Expectations that grief should end within an allotted time are unrealistic and arbitrary.
  • Validate and accept whatever a person is feeling– numbness, anger, confusion, sadness. Feelings are not right or wrong, they just are.
  • Do not ignore or avoid the loss. If you do not know what to say, just listen and be present. Some people may process their loss by repeating the story. Be willing to listen again.
  • Provide physical comfort and practical support – food, housework, organization, help with childcare, outdoor chores.
  • Empathy, when genuine, can be helpful. Letting a person know that you have experienced similar feelings, if this is true, may alleviate loneliness and provide comfort that this pain will not last forever. However, try to avoid comparisons that set up expectations. Acknowledge that each of you will have a unique experience, but that you will be beside the person no matter what. Again, just listen.
  • Provide information about professional resources, support groups and counseling. Offer rides and support as needed.
  • Seek immediate help if thoughts of suicide are expressed.
  • Listen.

Traumatic or Complicated Grief:

Grief after a trauma, such as an accident, violent, sudden or painful death may be exacerbated by post traumatic stress disorder. There is increasing evidence that in such cases, treating the person for post traumatic stress is important in allowing for a healthy grieving process. Often the focus is on the person who has died or is in intensive care and the trauma to family members is overlooked. A professional evaluation should be conducted to be certain that appropriate treatment occurs.

Grief that is unrelenting, worsens over a long time, or is accompanied by unusual behavior may indicate complicated grief. A professional should evaluate complicated grief.

Blessed are they who mourn, for they shall be comforted.
The Beatitudes

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More articles on this website:


Other Articles/Links:

Journey of Hearts website
Grief’s Journey website
Journey Through Grief Website
The Compassionate Friend: grief support after a child dies

Sources/Further Reading:

Agnes Whitaker, Editor, All in the End is Harvest, an Anthology for Those Who Grieve, 1984, Darton, Longman&Todd, London.

Deborah Morris Coryell, Good Grief, 2007, Healing Arts Press, Rochester, Vermont.

Ronna Fay Jevne and James E. Miller, Finding Hope: Ways to See Life in a Brighter Light, 1999, Willowgreen Publishing, Fort Wayne, Indiana.

Lucille Clifton, Everett Anderson’s Goodbye, 1983, Henry Holt and Company, New York, NY. (A children‘s book that captures the stages of grief in beautiful simplicity relevant to any age)

Fred Rogers, Mr. Rogers Talks With Parents, 1983, Family Communications Inc. Pittsburgh, PA. (A parenting book that covers many topics and has a beautiful, simple approach to grief and dying)

Joan Halifax, Being With Dying, Cultivating Compassion and Fearlessness in the Presence of Death, 2009, Shambala Publications, Boston.

Slow Medicine

Q: How might I cast forth the loose matter and get down to the rock, the sure foundation, and there hearken to the divine voice which gives a clear and certain sound?
Query adapted from quote—John Woolman, c. 1770, PYM Faith and Practice, 2002

Quaker Spirituality gives us a tool for decision making in our process of Clearness. In a Clearness Committee, we wait in community for divine guidance surrounding the question or decision before us. An example of a discernment process in health care is Slow Medicine. Slow Medicine allows one to make decisions based in what is meaningful to a person, what long-term outcomes may be, how one wants to live until the end. It is not a specific type of medical care, but rather an approach to decisions that encourages people to consider medical interventions carefully, with an eye to the whole person, and the long-range consequences of those decisions.

“Slow medicine is a special commitment undertaken by families and health professionals working together to achieve the very fullest understanding of aging loved ones and their complex, ever evolving needs. This, in turn, leads to wiser decision making regarding formal medical interventions…. The journey with our loved ones through the final decades of their lives should not be strewn with wasted opportunities complicated by the wrong kind of medicine,” says Dennis McCullough, M.D. in his book My Mother, Your Mother.

An example of slow medicine is when a doctor would normally recommend major surgery for an acute problem, but knowing that the patient has other long-term health issues, decides to consult with a patient and family about other options, such as physical therapy or palliative care. The team of caregivers work together with the person to determine if the outcome of surgery is worth the pain and risk, if it may lead to further complications, or if it even may prolong rather than alleviate suffering.

These can be very difficult decisions for all involved, and Slow Medicine supports patient, informed decision making rather than rushing in to cure one problem without considering the whole person. Some useful questions to consider are:

  • What information about this person would help the person being cared for, the caregivers, the doctors, that they may not be aware of?
  • How are each person’s values, emotions and experiences, especially those of the person in need of care, considered?

“The sunlight shines through the cloud; even when the cloud is so thick we cannot see the sun at all, its rays carry on their healing work…”
T. Edmund Harvey, 1929, PYM Faith and Practice, 2002

How the Meeting/Faith Community Can Provide Support:

  • Discernment: We can be supportive of those facing physical, emotional or cognitive challenges by supporting spiritual discernment. Clearness committees can help individuals and their loved ones make decisions that are grounded in the unique spirit and values of the one in need of care.
  • Planning: Encourage people to make their wishes known through living wills or advanced directives, so that family members left behind can be at peace with decisions they may face when/if the person in incapacitated and cannot participate in the decision making process.
  • Caring: It is helpful for people to know that they will be supported and cared for regardless of the outcome of their decision.

“Facing the future, even with a sure faith, is not easy. I am cautious at every step forward, taking time and believing I shall be told where to go and what to do. Waiting patiently and creatively is at times unbearably difficult, but I know it must be so.”
Jennifer Morris, 2001 PYM Faith and Practice

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Visit Dennis McCullough’s Website

Sources/Further Reading:

Jane Gross, “For the Elderly, Being Heard at Life’s End,” The New York Times, May 5, 2008

Dennis McCullough, My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for your Aging Loved Ones, Harper Collins, USA, 2008

Hospice Care

“I am tremendously content to let one activity after another go, and to wait quietly and happily the opening of the door at the end of the passageway that will let me into my real abiding place.”
Hannah Whitall Smith, 1903, PYM Faith and Practice, 2002

Hospice is an extremely useful service to a person who might have only a few months to live and his or her family. Such was my own case: my 86-year-old mother had been living with me for eight years.

One evening, I had just been home to check on my mother before I went out socially with the local hospice director. The hospice director asked me about Mom’s condition. I let her know she did not get around much. Mom was basically wheelchair bound and incontinent, but she did not seem to have any life-threatening illness. The Director replied, “I’ll bet she would be eligible for hospice.”

I was surprised. Here I was, a gerontologist working on end-of-life research and I did not recognize that she might qualify for hospice. The next morning I called her doctor, “Do you think Mom might die within six months?” He laughed, “I don’t know when your mother will die, but I will agree to her having hospice.” The intake nurse from hospice program came over and did an assessment. Sure enough, my mother qualified for hospice care.

But, oh, what would I say to Mom? I decided to be very upbeat, as if we had just gotten a bonus check on life, and went into her room saying, “Guess what, Mom? We can get hospice! Wow, this is great.”

And indeed it was great. It meant that a nurse case manager came every week to check on Mom’s health and well-being. She would occasionally suggest different medications to the doctor. If the doctor agreed, soon would come a delivery of free medicine. The same happened with equipment needs that made it easier to care for her. A delightful chaplain came regularly to chat. I’m sure he heard how Mom felt ready to die and go be with Daddy in heaven. A young hospice volunteer came and I am quite certain he was asked more of his own life story than he got out of Mom. An aide came twice a week to bathe Mom or do what she needed. This help was all a great boon to the housekeeper and myself as we tried to keep up with her care.

About four months into the program, Mom was a little weaker, and it was harder to get her in and out of bed. A device called a Hoyer lift was brought in to help lift her from the bed, but the space could not accommodate it. The long-term housekeeper was moving on, and I was getting quite nervous as to how I would pull my daughter’s wedding together in six weeks, keep my job, and maintain good care for Mom. The chaplain and case manager counseled me to check Mom into a nursing home. They would be able to follow her care there. Reluctantly, I did. Mom ended up in a very nice personal care home where her hospice care continued.

The family all came for the wedding. Mom got to go in a special van, even stayed to watch the festivities. The family left after farewell visits with Mom. The hospice aide had started a routine of bringing her guitar on her regular visits in order to sing hymns. The primary hymn they sang the following day was, “I’ll Fly Away.” Mom did indeed fly away the following day. I was working out of town, but rushed back when I got word that her death was eminent. When I arrive her body had been washed and she was beautifully peaceful. The hospice bereavement chaplain was waiting there for me, assisted in my last goodbyes to Mom, and guided my next steps.

Mom had died five months after enrolling in hospice and five days after her last granddaughter’s wedding. Hospice filled mom’s end-of-life care with great quality, all at no cost! I also had the benefit of bereavement care for the next year.

Basic hospice features are:

  • Medicare, Medicaid and most health insurances pay for hospice. In addition, hospices never turn people away because they cannot pay.
  • The patient has no further aggressive treatment to cure an illness, all medical treatment is palliative, or comfort care, with excellent pain and symptom management.
  • Hospice is run by a team: nurse/case manager, social worker, aide, chaplain, bereavement coordinator, doctor, and volunteer.
  • The care is for physical, psychological, and spiritual needs.
  • Sometimes, a patient can easily get better with all the good care and “graduate” out of hospice.

“I have got to leave. Bid me farewell, my brothers!
I bow to you all and take my departure.
Here I give back the keys of my door – and I give up
All claims to my house. I only ask for last kind words
from you…”
Rabindranath Tagore

Download this article in pamphlet form

LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. Articles from this site will open in the same browser window/tab. Articles from other websites will open in a new window; when you are done, simply click out of that window and you will be back on this site.

More articles on this website:

End of Life Decision Making and Quaker Testimonies
Care of the Caregiver
Slow Medicine

Other Articles/Links:

Caring Connections information about hospice care
Find a Hospice or Palliative Care Provider

Sources/Further Reading:

Kirsten Backstrom, In Beauty, A Quaker Approach to End of Life Care, Pendle Hill Pamphlet 355, 2010, Pendle Hill, Wallingford, PA.

Denys Cope, RN, BSN, Dying: A Natural Passage, 2008, Three Whales Publishing, Santa Fe, NM.

Hank Dunn, Hard Choices, Fifth Edition 2009, A&A Publishers, Inc., Lansdown, VA or order online

Lucy Schreechfield McIver, Song of Death, Our Spiritual Birth, A Quaker Way of Dying, Pendle Hill Pamphlet, Pendle Hill, Wallingford, PA.

Blessed are they who mourn, for they shall be comforted. The Beatitudes

Being Present When Friends are Ill

Q: How am I present with others in my community when they are experiencing challenges?

We are on this life journey together. Any of us, at any time may find ourselves relying on others. In fact, we truly cannot exist without one another, regardless of our strength. Yet it is usually hard for us to accept that we need help, especially when it is likely that our need for care will increase as time goes by. . Or, we may find ourselves caring for a friend or family member. We want to be supportive but may not know how, or we are afraid of being overly intrusive.

Family, friends, colleagues, and all the significant people in a person’s life are potential partners with that person on the journey through illness, disability, memory loss or other changes that may come along. Caregivers need to be supported in their needs along with the person facing new or chronic challenges. The more each of us understand and learn, the better we will be able to navigate the journey together. Though we cannot all be experts in the many areas of need that may face us in a lifetime, we can practice being present for one another in love and compassion in any circumstances. The process can be one of deepening and growing in love as each person’s needs and values are considered, and each offers their strengths and unique perspective.

“The remarkable discovery we can make is that love has not deserted us, and that it is available to us now in a new way.”
Margaret Torrie, 1975, PYM Faith and Practice 2002

James E. Miller and Susan Cutshall, in The Art of Being a Healing Presence, developed seven simple steps for people accompanying a person through illness or other care needs. This is a highly recommended book for anyone who is or may be in the role of a caregiver, as family, friend, or member of the spiritual community. Linuponivil . Below is a Quaker adaptation and summary of those steps.

Quaker ABC’s of Healing Presence*

  • Allow Opening — to your experiences, vulnerabilities, and fears. Consider your own life story and accept how this has influenced your unique spirit; extend to yourself the compassion you wish to extend to others.
  • Be Intentional — in your decision to be a healing presence. Be patient with your fallibility.
  • Clear — yourself of other obstacles and concerns. At least, for the moments you are together with the person in your care, be present, make space for calm.
  • Discover the Light— within the individual you are with, respect their innate capacity for healing. Appreciate who they are, as they are, in this moment.
  • Extend your Gifts — openly and simply. Know it is up to the other person to accept them. Offer empathy, dependability, unselfish focus, love and acceptance.
  • Freely Receive — what this person, this experience, has to offer, and be grateful.
  • Grace and Balance — know that setting realistic limits on what you can do will allow you to be a more open presence for others. Accept that you are also a person with needs.

*Adapted from James E. Miller and Susan Cutshall, “Steps to Being a Healing Presence,” The Art of Being a Healing Presence, pages 74-75,Willowgreen Publishing, Fort Wayne, Indiana, 2001.

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LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. Articles from this site will open in the same browser window/tab. Articles from other websites will open in a new window; when you are done, simply click out of that window and you will be back on this site.

More articles on this website:

Role of the Spiritual Community in Care
Spiritual Approach to Dementia Care
Vigiling: Being with a Dying Person

Other articles/links:

Jame’s Miller’s book and other resources from Willowgreen Press

“Compassion strengthens your outlook, and with that courage you are more relaxed.”
Dalai Lama, Mind of Clear Light