Caregiver Revolution

Each July, the National Center for Death Education (NCDE) hosts a summer institute on the campus of Mount Ida. This annual program is made up of a series of workshops focused on grief, loss and bereavement. Participants explore counseling and educational techniques that include building interpersonal skills and assessing individual needs. Through continued participation in NCDE programs, including the summer institute and completion of a scholarly project focused on one specific area, individuals can earn a Certificate in Thanatology.

2008 Summer Institute

July 21, 2008
An Attachment Theory Perspective on Adjustment to Bereavement

July 22, 2008
Children, Death and Grief

July 23, 2008
Late Adolescent and Young Adult Loss

July 24, 2008
NEHS: Transcendence in Theory and Practice**

July 25, 2008
NEHS: Advanced Diversity Skills for Practitioners**

**Thursday and Friday is a two day seminar on New Ethics of the Human Spirit. However, each day is a complete workshop and can be taken individually.

Register

All workshops run 9:30 – 4:30
(Registration and continental breakfast begin at 8:30)
For more information, contact NCDE at ncde@mountida.edu

The AHNA conference is getting close, June 2-5, and rooms are selling out at the Mount Washington Resort in Bretton Woods, NH. Looks like it is going to be terrific. Check their website for details. www.ahna.org

First a definition: death is the separation of the soul from the body, a phenomenon we can’t know has happened with moral certainty until corruption has begun. “Death” does not mean the cessation of breathing or heartbeat, nor does “brain death” mean that death has occured. The soul isn’t “in” the heart, or “in” the lungs, or “in the brain, or “in” any particular part of the body. The treatment of the dying, the apparently dead, and their organs is goverened by this Truth.

Now, a person confronting death should receive the Sacrament of Unction for the possible restoration of body (His will be done) and, most importantly, soul. This is of prime importance and should never be neglected.

Other ways to help prepare the sick person for death are to pray the Holy Rosary (focusing on the Sorrowful Mysteries), the Divine Mercy Chaplet, to St. Joseph (the Patron of the dying) for a holy death, etc. — with the sick person, if possible, or in such a manner that he can hear you. This includes audible prayer for the unconscious; never think that those who are unconscious or in a coma can’t hear you!

The sick person should have a Crucifix (a St. Benedict Medal Crucifix, if possible) in view, perhaps to hold if he can, and should be encouraged to offer up his sufferings and to trust in the love and mercy of our Lord Jesus Christ. A lit blessed candle, as a symbol of the sick person’s Baptism — a symbol of sanctifying grace and the promise of eternal life — should be placed nearby so he can see the flame (unless oxygen tanks are in use, of course!).

You’ll note that the Catholic way of death is different from that of other “Christian” groups. We don’t try to sanitize it and avoid the topic. We don’t speak in euphemisms about it. We don’t take salvation for granted, except the salvation of the souls of baptized children who’ve died before the age of reason (but we, of course, trust in the mercy of God for all others). And we don’t consider it a sin or, at the least, a faux-pas to mourn. While we don’t exactly “sit shiva,” we don’t see jumping up and down and singing happy songs as the natural reaction to having to miss someone until one’s own death. In other words, it’s OK to rend garments and weep; these things are not expressions of a “lack of faith,” but are normal, natural reactions to the evil of death, and to missing someone and realizing that it will be some time before you see him again, Deo volente.

It must be remembered that sickness and death are great, great evils; they were not “supposed” to be a part of this world, and came about as a consequence of the sin of Adam. Christ, of course, conquered the tomb and gives us the hope of eternal life. Catholics, then, look at death for what it is — an evil — but cling to the hope He offers, trusting in His Divine Mercy while also realizing that He is Just. Christ Himself wept before the dead Lazarus.

Now, the sick person shouldn’t be denied the Truth of his situation any more than those around him should lie to themselves. It is not a loving act to ignore reality out of fear of not wanting to alarm the sick one, and to do so is to imperil his everlasting soul. The dying person needs to face his mortality, to repent, to pray, to receive Unction, to be encouraged to trust totally in Jesus and His forgiveness and love, etc. He must spiritually prepare himself for judgement, and to help him do this is the single greatest act of love you can offer.

Sacred Dying: Creating Rituals for Embracing the End of Life • Life and Death on Your Own Terms

by Megory Anderson; Roseville, California, Prima Publishing, 2001, 364 pages, $23.95 • by L. L. Basta, M.D.; Amherst, New York, Prometheus Books, 2001, 364 pages, $26

Mary Ellen Foti, M.D.

Sharing the commonality of topic and tactic, Sacred Dying and Life and Death on Your Own Terms speak to the multiple complexities of achieving a “good death” (1,2) in today’s reign of medical technology. That Americans have specific preferences about both how and where they want to die has been documented in numerous studies (3,4). However, despite this research, the end of life is all too often a harrowing experience for patient and family alike. Anderson and Basta offer possible remedies for this problem.

Anderson, speaking to anyone dealing with the death of a loved one, states that Sacred Dying “is about bringing spirituality, through ritual, into the physical act of dying.” Basta recommends his work to those “who care deeply about preserving their dignity and sparing loved ones the agony and economic consequences inherent in life-and-death decisions.” Although the authors’ respective locales and perspectives are very different, they both use storytelling as a means of describing dilemmas and pointing out solutions. Both books recognize the critical importance of facing one’s own mortality in order to support and care for a person as they pass.

Anderson is a theologian who honors the experience of dying by using spiritual rituals to help people “leave the body so that the soul can move forward.” Most of the deaths she describes occur either in homes or in situations where technological stopgap measures will not be initiated. Basta, by contrast, is a cardiologist. He describes dying patients in high-tech teaching hospitals who are prodded, poked, and cut to “maintain life”—a life that few would choose.

Basta’s book is as much a reference as a guide. For the medical student or early-career physician, it teaches the principles of autonomy: paternalism, beneficence, and shared decision-making. The author appreciates the pressures to which doctors must respond—from patients, families, administration, or policy—when caring for a patient for whom cure is not achievable. The book’s scenarios depict thorny decisions that patients, families, and physicians might face and outline the ethical principles that can be used to structure responses to questions about the denial or withdrawal of treatment with respirators, feeding tubes, antibiotics, and cardiopulmonary resuscitation. Basta reminds those of us in medicine that the job includes much more than the scientific application of technological innovations. It involves the art of caring for an individual’s dignity by being thoughtful, kind, and present.

Like Basta, Anderson focuses on the protection and preservation of an individual’s dignity at the end of life. Her approach describes the goal of care as a spiritually sustaining process for the dying person. She shows the reader how to calmly approach the dying person to determine what is most important to him or her. The space between the process of death and the event of death is expanded, if not in time, in spirit. Attention to the person’s corporeal and spiritual needs helps transform the experience. Spiritual interventions take many forms: music, aromas, textures, lotions, words, silence, and prayer. Anderson recounts multiple stories that exemplify her methodology.

Sacred Dying and Life and Death on Your Own Terms offer practical tools, though vastly different, in their appendixes and other end matter. Anderson includes works from the scriptures and other sacred texts, poetry, readings, and prayers. The selections represent most of the major religious rites of the world. Her bibliography is replete with sound readings on general death and dying, spiritual concerns, rituals, religious traditions, multicultural traditions, the afterlife, practical concerns, ethical issues, music, and the psychology of death. Basta presents an extensive glossary of medical terminology, an advance care planning template complete with specific end-of-life scenarios, and some 350 references.

Hospital-based medical personnel—physicians, nurses, social workers, medical students, and others—will appreciate the familiar structure and texture of Basta’s work, which resonates with personal experience while clarifying complex ethical issues. Critical care providers will be encouraged by Anderson’s competent description of ways to soothe patients with the ancient balm of spirituality. Therapists of all disciplines who work with patients and families on issues connected with terminal illness will refer frequently to both books and be rewarded.

Because most of us are troubled by the thought of our own passing, we are ill prepared to aid and support a patient or a loved one on their last voyage. Each of these books helps us to calmly appreciate the truth that “to everything there is a season, a time for every purpose under heaven: a time to be born, and a time to die” (Ecclesiastes 3:1-3), and in so doing, we become more able to bear witness to death.

Footnotes

Dr. Foti is assistant professor of psychiatry at the University of Massachusetts Medical School in Worcester.

References

1. Emanuel E, Emanuel L: The promise of a good death. Lancet 351(suppl II):SII21- SII29, 1998
2. Steinhauser KE, Clipp EC, McNeilly M, et al: In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine 132:825-832, 2000[Abstract/Free Full Text]
3. Emanuel LL, Barry MJ, Stoeckle JD, et al: Advance directives for medical care: a case for greater use. New England Journal of Medicine 324:889-895, 1991[Abstract]
4. Fried TR, van Doorn C, O’Leary JR, et al: Older persons’ preferences for site of terminal care. Annals of Internal Medicine 131:109-112, 1999[Abstract/Free Full Text]

A Journey From the Known to the Unknown (from the excellent newly revived about.com/palliative care section)

Refusal of artificial feeding as a natural part of dying

Judith Ahronheim, MD

Adapted extract from an article entitled ‘Artificial feeding: what’s involved?’ by Judith Ahronheim, MD, Associate Professor of Geriatrics and Medicine at Mt. Sinai Medical School, New York City. This article appeared in the Choice in Dying newsletter for Summer 1984. Choice in Dying is an American not-for-profit organisation which issues Advance Directives for each state, and various other publications such as DDying at Home (US$5) which looks at the legal and medical implications for the family of a person preferring to die at home rather than in hospital.

Although potentially valuable and life saving in many situations, artificial nutrition and hydration do not provide comfort care for dying patients. Experience and available scientific evidence have shown that death without artificial nutrition or hydration is natural and pain free. Most dying patients feel little hunger; some stop eating completely and drink less and less. When patients experience severe symptoms, such as pain or nausea, these are due to the disease itself, not the avoidance of food and water. If a patient experiences thirst, it is usually controlled by sips of water, ice chips, or lubricants for the mouth. Patients with brain disease who avoid nutrition and hydration quickly slip into a coma, a sleep-like state that is inherently free of pain.

In contrast, tube feeding prolongs and often worsens the dying process. Terminally ill patients can sometimes benefit temporarily from artificial feeding. But to assume that it must always be provided fails to consider the patients’ needs. Because we ourselves tend to see the provision of food and water as intrinsic to caring, we sometimes feel uncomfortable about withholding artificial nutrition and hydration. When we are entrusted with making decisions for the dying, we need to broaden our understanding of caring so that we address the patient’s ccomfort, not our own.

The possible side effects of tube feeding

Tube feeding differs from ordinary feeding in important ways. Technical skill is required to insert the tube and make decisions about what type of feed is given and how much, but even with skilled care, there can be side effects.

Implantation through the abdominal wall can cause surgical complications and skin infection. Feeding tubes can traumatise and erode the lining of the nasal passage, oesophagus, stomach or intestine. Most patients fed by tube have brain disease and are unable to report that they feel full or unwell, so abdominal bloating, cramps, or diarrhoea may occur. Regurgitation is common, and the feed may be inhaled into the lungs. Confused patients can also become anxious over the tube’s presence and try to pull it out. This can lead to the imposition of mechanical restraints – tying the arms down – which heightens their distress. Intravenous lines can be uncomfortable, especially if fluid leaks into the skin or the skin becomes inflamed or infected. Intravenous fluids must be given with extra care to frail patients in order to avoid fluid overload and serious breathing difficulties.

Choice In Dying, Inc., 200 Varick Street, New York, NY 10014-4810 (tel 212 366 5540; fax 212 366 5337).