Tuesday, December 9, 2008

Buddhist prayers for the dying

Buddhist prayers for the dying

April 16, 2008 · by Loden Jinpa · Meditation

I often get asked, what people can do during the last days of a loved one.
Below is some simply advice for anyone currently dealing with death.

What to do when someone is dying
Generally speaking, just having good thoughts and memories of your loved one will be helpful both to you and your loved one(s). Getting upset, crying or getting angry, will only serve to make things worse. A persons state of mind at the time of death is important for a good rebirth. Therefore it is best to help the dying person remain calm and happy. Reminding them of events that will only cause problems is not a skillful action. So try to avoid this as much as possible.

If you feel so inclined, you and if possible, the dying person can meditate on compassion and loving-kindness for all sentient beings.

Start off the meditation by not focusing on a friend, as this can cause people to get upset and attachment to arise. Think about someone like a work friend or someone similar. Someone that you know and care for but, who is not too close that attachment will arise. Then as the meditation continues, add more and more people into the scope of your attention. In the end add all beings, even your enemies if you can without causing issues. Then this is the important part, try and develop a feeling that all the beings in the scope of your meditation are of equal importance to you. Why? because all beings want happiness and do not want suffering. No one wants to die, not even the worse people! But, we all have to leave our bodies behind. We all come into the world naked and all we leave naked. In this regard we are all the same, we are all equal. Try and develop a sense of equanimity towards all beings. This will happy remove attachment for friends and family and anger for people you feel have done you wrong. Buddhist assert that someone who dies with this type of mind is very likely to have a good rebirth.

In terms of a Buddhist prayers for the dying you and if possible the dying person can recite the following prayer.

By this virtue (reciting this prayer), at the instant of death, may you take rebirth in Tushita (a heavenly realm). May you meet the limitless Bodhisattvas and be cared for by Maitreya, our supreme refuge.

Through the fire of great love, the wood of hatred is burnt.
Through the light of pristine awareness, the darkness of ignorance is dispelled. To the Regent of the Dharma (Maitreya Buddha) abiding in Tushita, I prostrate.

Also, learn the death process itself. If the dying person is a Buddhist and they want to hear. Read to them the explanation of the death process. This will also be useful for when we are dying.

Thursday, November 13, 2008

Role of Ritual from SIG Spiritual Care Toolkit

Role of Ritual

Developing an appreciation of the rituals associated with various religious belief systems aids spiritual care-giving for oncology patients. As spiritual needs such as meaning, purpose, hope, love, forgiveness and gratitude, or spiritual issues such as fear, anger, guilt, shame, or sadness are identified, patients may find hope and comfort in the practices and rituals of their religious beliefs. Although religion and spirituality are different, the rituals of religion may be an avenue to the spiritual connectedness with self, others, and God and help with questions of suffering or an afterlife. Rituals alone can become mechanical but with faith they can give shape to the more abstract beliefs one holds. The practice of a particular ritual can be the means that we outwardly express an inner belief or prepare our hearts and minds to inwardly accept a divine intervention. Rituals can point to the sacred, the holy, the transcendent.

Rituals belong to the social life of society. They can remind us of who we are or to whom we belong. They place a present circumstance into the traditions of history and those who have gone before us. For someone that has long been alienated from their religion, a cancer diagnosis may the catalyst for a return to the practice of one’s faith. A life review may remind a patient of times of religious support or meaning. Oncology nurses can assist in mobilizing spiritual resources as they are familiar with the rituals of one’s religion. An awareness and respect of the rituals at the end of life are essential in compassionate caregiving and will have continual effects as they may help to meet the spiritual needs of loved ones who are left to grieve, mourn and find meaning in their loss.

This article goes on to detail rituals of different religions and traditions at the end of life. Highly recommended! See the complete article at http://wwwnew.towson.edu/sct/ritual.htm

Thursday, October 16, 2008

National Spiritual Care Summit

National Spiritual Care Summit

A joint project by City of Hope and the George Washington Institute of Spirituality and Health, sponsored by the Archstone Foundation

We are pleased to announce a new project, described in this press release. GWish is partnering with City of Hope to hold a Spirituality Summit to develop tools and resources in spiritual care. This project is sponsored by the Archstone Foundation.

A key component of this project is a white paper or policy paper that will be used to help frame future research and projects in Spirituality and Health. If you are interested in this project, and/or interested in contributing clinical or educational resources in spiritual care, please let me know by email at hcscmp@gwumc.edu.

I look forward to hearing from you.
-- Christina Puchalski

Thursday, October 9, 2008

World Hospice and Palliative Care Day - India

World Hospice and Palliative Care Day - India
Wednesday October 8, 2008
To celebrate World Hospice and Palliative Care Day on October 11, 2008, CanSupport will hold a full day workshop together with the Foundation of Universal Responsibility of HH The Dalai Lama in New Delhi, India

The title of the workshop is "Finding Meaning from Life in the Face of Death'. Speakers will range from the religious to the secular and will include practitioners of hospice and palliative care. The purpose is to start a dialogue that will begin the process of evolving toolkits, rooted in different religious and secular traditions, so as to help people deal with the spiritual and existential crises that they experience at the end of life.

The workshop will be followed by an evening outdoor concert at the India International Centre which will be open to the public and will include healing music from diverese religious traditions in India.

http://www.cansupport.org (from about.com)

Saturday, September 13, 2008

Working with Transition w/ Patricia Elizabeth

Working with Transition: How to use the energy around crisis to solve the problems associated with change
This workshop is the latest offering by Paticia Elizabeth – Minister, terminal midwife, and author. Patricia has worked for over 30 years in midwifery and death & dying, having associated with Elisabeth Kubler-Ross, Reb Zalman Schacter, EJ Gold and Claudio Naranjo. She is a cancer survivor and is now working with the crisis management of transition. Her workshop will offer a hands-on, practical, approach. Patricia has done extensive work with the Tibetan, the Egyptian, and the American Book of the Dead. Co-director of the Labyrinth Readers Society, Patricia has given scores of workshops - spiritual midwifery, ministering to the dying, dream circle, art as healing, establishing sacred space and many others.

Friday, September 12, 2008

Movie Lovers take Heart

This is a nice page of quotes from the movies, not only for the quotes themselves but for the list of movies they evoke. And if you are a movie lover you are definitely going to want to know about this site...
http://www.reellifewisdom.com/taxonomy/term/death_and_dying

Tuesday, August 5, 2008

PAL 2008

The 17th International Congress on Palliative Care is gearing up to go on September 23-26, 2008 in Montréal, Canada. See http://www.pal2008.com/ for details!

Thursday, July 10, 2008

Sivananda on Prayers for the Dead

The prayers, good thoughts or good wishes and Kirtan become helpful to the departed souls. They can be of invaluable assistance to the dead. Prayers for the dead form an integral part of most of the religions. The Catholic Church conducts prayers for the dead.

Prayer acts on the principle of a radio station and broadcasts the waves of good thoughts just as the radio station broadcasts waves of sound.

Prayer or Kirtan is a mighty force which helps the departed souls in their progress towards heaven and their quiet passage through the intermediate state.

The departed souls remain in a state of swoon or unconsciousness immediately after death. They cannot feel that they are detached from their previous gross material bodies. Prayers, Kirtan and good thoughts from the relatives and friends can give real solace to the departed souls. They create a potent vibration and an awakening in their stupefied condition of mind and bring back their veiled consciousness. The souls begin to realise that they are not really in their gross material bodies.


Then they endeavour to cross the borderland, a narrow river of ether, which is known as Vaitarani by the Hindus, Chinavat bridge by the Parsis and Sirat by the Muslims.

The weeping and mourning and the uncontrolled grief of their relatives give them pains and drag them down from their astral planes. This may seriously retard them on their way to the heaven-world. This produces serious injury to them. When they are sinking peacefully and when they are ready to have glorious awakening in heaven, they are aroused into vivid remembrance of the mundane life by the weeping and wailing of their friends and relatives. Their thoughts produce similar vibrations in their minds and produce acute pain and discomfort.


Therefore, relatives and friends should do Kirtan and prayers for the peace of the departed souls. Then only they can really help and comfort them. If ten or twelve persons sit together and do Kirtan and prayer, it will be decidedly more powerful and effective. Collective prayer and Kirtan exercise a tremendous influence.


* * *
From http://www.experiencefestival.com/a/Sraaddha/id/9828

Thursday, July 3, 2008

YouTube Project

Hey....just started posting some video interviews and presentations. First up is Harmonics of Healing with Darrell Brann. See link on our home page or at www.youtube.com, user hospweb. Next will be an interview with Jerris Hogue about labyrinths and then we have a line up of others to say a few words. There's lots of helpful material on youtube about how to get started. Our good friend nuubtv helped us a lot. Not to worry, our video skills are improving as we go!

Sunday, June 22, 2008

Metta Inst. End of Life Care Practicioner Program

Just received a very nice mailing, a call for candidates for the year long Metta Institute EOL program which consists of six residential intensives (3-7 days in length) around the SF Bay area starting January 2009 with extensive phone mentoring available as well. The program is primarily designed for those working in the EOL field but it looks like the leaders are willing to take this work in new directions, so those with creative and entrepreneurial interests are invited to apply as well. The emphasis of the program is reclaiming the spiritual dimension of dying.
"Dying is much more than a medical event. It is a unique opportunity for growth and transformation for all involved."
This looks like a terrific program and the testimonials on the flyer show that it has transformed the work of those who have taken it. More information at:
www.mettainstitute.org

Thursday, June 19, 2008

The Gentle Attention of the Sagrada Familia

I’m on a plane flying back from Spain and dreaming of the Sagrada Familia. This cathedral of mass proportion is Antonio Gaudi’s most famous work in progress where there are currently hundreds of stone masons, carpenters, architects, artists, plasterers and other artisans working under the sacred influence of its towering vaults.
Gaudi was a master of space and design far beyond any we have seen or can see today. It is amazing to think that his work alone can propel a project as huge as the Sagrada Familia and influence millions and millions of people…it’s visitors and almost all of the residents of Barcelona from the 1920’s until today. For yes, anyone who sees or visits the Sagrada Familia will be influenced. As one stares up in wonder at the 4 Cathedral towers or enters and climbs the spiraling stairs inside of them, they confound the intellect and allow a profound mood to overcome one. The beautiful and compassionate figures on the outside inspire gentleness, and as one enters and climbs making his way up to the dizzying heights he starts laughing and smiling at others, complete strangers who are there climbing in the labyrinth along with him. Somehow it is quietly known that we are all here in the same predicament…stuck on the earth but subject to strong divine influence.
The residents of Barcelona are a deep people. Serious and quiet, courteous to a fault, proper and elegant, they take their time to enjoy life. Even a cup of espresso is a cause for revelry; made, served and sipped with care and attention. I actually went to Spain attend a multi-disciplinary workshop on death and dying and developing of the powers of presence and attention, (this will be explained later). But what I truly learned was that here are people of intensely acute intellect who at the same time are able to offer warm heartfelt hospitality. The workshop aside, isn’t this what effective and compassionate care giving is truly all about?
The workshop was actually on the Isle of Ibiza, one of the Balearic Islands in the Mediterranean south west of Barcelona. The ferry trip to get there is 8 hours of generally smooth sailing, with an early morning landing in a busy resort city which was quieted by the "cold weather" (60o F) of the winter months.
We were to drive 20 miles or so outside of the city to a villa outside of St. Joan, a tiny town to the north, and as I was traveling with kids the importance of the proximity of this town with its excellent little grocery store was not to be underestimated!
Our workshop approached the question of "How can one develop his or her presence and attention so as to be able to work more effectively for the benefit of all beings every where," from many different angles, one of which was work in the field of death and dying. This work is high attention work as all hospice workers know. It comes under the category of high compassion for another being through times of extreme physical hardship or distress. We all know that it usually isn’t a matter that he or she who is dying is so incredibly distressed. We also know that the dying are the real guides in the process. But we can only realize this if we are maintaining an atmosphere of high attention and equanimity in ourselves. This is a skill which can be taught and learned, the only prerequisite being the desire to care.
The skills of the terminal midwife were taught by Patricia Elizabeth. We learned about keeping our physical bodies relaxed and free of habitual tensions and gestures or movements. Some part of us wants to get fidgety, make movements to cover the uncomfortable and mostly fearful feelings that accompany these spaces. But we are better off and can offer more to the person who is dying by tolerating a non-reactive space. We will survive. We will eventually be in a more highly observant, less reactive state and we needn’t worry, we will definitely go back to our habitual patterns when the situation is over. We don’t have to worry about that. But while we are spending valuable time with some one who is leaving this bundled nervous system we can try to be in their space. Be a good observer. Not stern or critical but tolerant receptive and compassionate. If you free your energy from your own unconscious twitterings you will be able to apply higher concentration on the needs of the one who is dying. A real gift.
Now there are some practical tips about doing this. Continually check and scan the body for tension and breathe it out or let it pass out into the ground through the feet. Maintain a "wide angled" vision, keeping the eyes aware of the periphery and not getting overly focused on any one detail. This allows for a higher sensitivity to the space and greater "sensing."
Now what exactly is "sensing?" After this workshop, I have come to view it as one of the most important faculties that we can develop as compassionate caregivers. There are many ways that we can try to get an answer to this question if we think that it is an important one. One can observe oneself and in this way develop a higher sensing ability. He or she can observe while going through his or her daily routine or while doing group exercises such as Tai chi. Keeping the mind alert and focused on the movement, keeping the body relaxed, (the face is a good indicator for this), and being aware of the leader and the others in the group, this will give one an idea of what sensing is. But here I must apologize to my readers for as skilled hospice workers, you are already most certainly aware of these concepts, if not in this exact language.
In the workshop we also learned about maintaining contact with the "voyager" or one who is dying. Relaxed and maintaining diffused vision, we stay alive to the space and open to any possibility but it is really no big deal. If the person wants to talk we are there to listen, if they want to listen we can do a reading from any text that they might prefer or we can tell a story. But while doing any one of these things we are working on maintaining a posture of high attention…we try not to let our minds wander too much. One thing that we can be sure of is that there is some part of the person lying near us that is fully aware, fully present and comprehending aspects of the situation that we can’t hope to know ourselves.
It is as if we are approaching Gaudi's great cathedral. We are sometimes given opportunities in life, reminders to be in a state just a degree or two different than the normal day to day. As hospice workers we can continually thank our patients for this gift to us.

Monday, June 16, 2008

Upaya Zen Center Summer Schedule

Just discovered these programs at the Upaya Center, www.upaya.org which also offers offers a two-year Certificated Buddhist Chaplaincy Training Program in End-of-Life-Care.

Jul 10, 2008 — Jul 13, 2008 COMPASSION AND WISDOM AT THE END OF LIFE: Practices and Perspectives
Frank Ostaseski, Roshi Joan Halifax

Sep 28, 2008 LIVING WITH ILLNESS: The Nature of Change and Transformation
Roshi Joan Halifax (when available), Susan Benjamin, Jean Wilkins
Donation to teachers and Upaya.
Registration & Program Details

Oct 01, 2008 — Oct 05, 2008 PRESENCE AND COMPASSION: Contemplative End-of-Life Care

Upaya also hosts a women’s retreat, IN THE SHELTER OF EACH OTHER: Power, Compassion, Resilience and the Shadow: July 16-20, 2008.

Wednesday, June 11, 2008

AHNA Conference

Just back from the White Mountains of New Hampshire where we had a table at the Holistic Nurses Conference. The energy of this conference is incredible. I don't say that lightly...it really is a terrific event and I highly suggest that if you are involved in any kind of healing or patient care work that you make plans to attend next summer's conference in Madison, Wisconsin. You come out of this conference refreshed and inspired to continue with your work and with the sense of being part of a much larger community. See AHNA.org for details.

Sunday, June 1, 2008

Right to Know End-of-Life Options Act

Got this notification from a friend. I haven't examined it in detail but on the surface it looks like a good thing...if it can get through the legislative channels...

We are excited about progress in the California Legislature and want to
share the good news with you right away. If it passes in the full
Legislature, Compassion & Choices' Right to Know End-of-Life Options Act
will be the first law of its kind in the nation. Patients will gain the
right to receive full and frank disclosure of all their legal
end-of-life options, if they ask for this information. Our usual
opponents, Right-to-Lifers and radical disability activists, oppose even
the right to a candid conversation! But with the state's medical
association at our side in this fight, we believe we will be able to put
this bill on Governor Schwarzenegger's desk by autumn.


The California State Assembly voted 41-32 Wednesday on the Terminal
Patients' Right to Know End-of-Life Options Act, AB 2747 (Berg-Levine).
Upon a dying patient's request, the Right to Know End-of-Life Options
Act requires a physician to provide counsel on the range of care options
available. These options include hospice care, voluntary stopping eating
and drinking, refusal or withdrawing of life-sustaining treatments,
palliative care and palliative sedation.

The bill will serve as a national model for conversations about
end-of-life care.

"We know from research terminally ill patients do not always get all the
information they want," said Assemblywoman Patty Berg, a bill co-sponsor.

In California, she pointed out, three out of four terminally ill
patients don't access hospice until just a few days before they die.

Thirty years ago, California led the nation by giving people the right
to express their wishes for health care in advance. It's time to take
this next step to ensure that terminally-ill patients have all of the
information that they need to make timely and informed decisions
regarding their care. Information and counseling regarding end-of-life
care options is essential for many terminally ill patients and their
families. It can help the patient weigh all of their options and make an
informed decision that best meets their needs. It gives the physician an
opportunity to discuss the benefits and disadvantages of all available
treatments, and it can facilitate earlier access to hospice care.

"Dying patients needlessly suffer due to a lack of essential
information," said Compassion & Choices President Barbara Coombs Lee.
"As a result, many spend their last days in agony. Too many patients
make the most important decision of their lives -- how they will spend
their final days -- without being fully informed of their legal rights."

The Right to Know Act will now go to the California Senate for
consideration.

Thursday, May 22, 2008

Entries for Spiritual Care Conference

The Spiritual Care Collaborative, is inviting 90-minute workshop proposals for the Spiritual Care Summit ‘09 at Walt Disney World®, Florida, February 1-4, 2009 see http://www.spiritualcarecollaborative.org/scc_summit09.asp

Tuesday, May 13, 2008

How to do a Spiritual Reading

We have been working on "Ten Steps to do a Reading" and it is going well. It will be a little handbook with pointers as to how to set up a reading space and gauge if the reading is going well. Ultimately, only one thing is required in order to do a reading for the benefit of another being: the desire to help that being. Typically one thinks of the Tibetan tradition, the books of the dead, when referencing the art of reading. I use the American Book of the Dead by EJ Gold because has the same bardo guidance material but is more culturally relevant. The Tibetan Book of Living and Dying by Sogyal Rinpoche is a good source book on this as well as Luminous Emptiness by Francesca Fremantle and several texts of Robert Thurman

Tuesday, April 29, 2008

Mt. Ida College Summer Program

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

Wednesday, April 16, 2008

Holistic Nurses Conference

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

Thursday, April 3, 2008

The Catholic Way of Dying from fisheaters.com

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.

Sunday, March 30, 2008

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

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]

Thursday, March 27, 2008

A Journey From the Known to the Unknown

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

Death is simply a shedding of the physical body like the butterfly shedding its cocoon. It is a transition to a higher state of consciousness where you continue to perceive, to understand, to laugh, and to be able to grow.
Dr. Elizabeth Kubler Ross On Death and Dying

Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality.

The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the traveler taking it.

One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets.

Food becomes less appealing as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person is sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. . The body does a wonderful thing during this time as altered levels of chemistry in the body produce a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, sometimes thinking others are trying to hurt them. They may also have a sense of grandeur, thinking they are invincible.

They may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have passed on before them. Some may see this as the veil being lifted between this life and the next. The may pick at the sheets and their clothing in a state of agitation. There movements and actions may seem aimless and make no sense to others. They are moving further away from their starting point in their journey: their life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventual stops altogether.

A Couple of Days to Hours Prior to Death

The person is moving closer to their destination. There may be a surge of energy as they get closer. They may want to get out of bed and talk to loved ones. They may ask for food when they haven’t eaten in days. This surge of energy may be less noticeable but is usually used as a final physical expression before moving on.

The surge of energy is usually short lived and then the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathes, may occur. Congestion can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work it’s way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely accepted that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred. They have reached their final destination in their journey.

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then someone at my side says: “There, she is gone!”

”Gone where?”

Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout: ‘Here she comes!”

And that is dying.
Henry Van Dyke

Sources

The Hospice Foundation of America: The Dying Process: A Guide for Caregivers
Barbara Karnes: Gone From My Sight: The Dying Experience
Sherwin Nuland, M.D.: How We Die

Wednesday, March 26, 2008

Refusal of Artificial Feeding as a Natural Part of Dying

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).

Improving care of the Dying in Residential Care Homes

Improving care of the dying in residential care homes

People in residential care and nursing homes might well like to talk more about death and dying, according to a study by Katherine Phillips at the Royal Star and Garter Home in Richmond. The residents Phillips interviewed in this home said that they did wish to talk about aspects of death and dying with staff. However, she found that any 'specific conversation around dying issues rarely happened between residents and staff'. Appropriate training is now planned for the nursing, care and administrative staff.

Katherine Phillips, The Royal Star and Garter Home, Richmond, Surrey TW10 6RR (tel 020 8940 3314; fax 020 8940 1953).

Counsel and Care have prepared the following very useful list of questions that residential care and nursing homes could ask themselves concerning death and dying.

The list features as a chapter of their book Last Rights (available for £6-60 from Counsel and Care - Jef Smith and his colleagues - Twyman House, 16 Bonny Street, London NW1 9PG, tel 020 7 485 1550; fax 020 7 267 6877).


Making preparations

(1) Have the personal wishes of all residents about the last phase of their lives been sensitively explored with them?

(2) Have any specific information or requests been recorded in each resident's case notes or care plan and made known to all relevant staff?

(3) Is there a record for each resident of who should be contacted when death seems likely?

(4) If residents indicate that they want to talk about the possibility of their dying, are staff able to respond or to call on someone appropriate?


A dying resident

(5) If a resident has to go to hospital, can they feel sure their room will be kept for them with their possessions in place ready for their return?

(6) If rooms are shared, is thought given to whether a dying resident or his or her companion would like to move?

(7) Does the bedroom remain a homely place throughout a terminal illness?

(8) Can a dying resident be assured that they will not be left alone, if that is their wish?

(9) Are the relevant friends, relatives or other sources of support contacted as soon as appropriate?

(10) Are frail or very sick residents helped to get up and visit other parts of the home if they want to?


Relatives

(11) Are relatives given information about a dying loved one in a way which is sensitive and timely?

(12) Can relatives be accommodated overnight so as to be with a dying relative, provided with refreshments and other facilities, and made to feel welcome?

(13) Are family members who feel able to, encouraged to participate in nursing and looking after the personal needs of their dying relative?

(14) Are relatives informed of a death promptly and helped to deal with the immediate emotional and practical issues they face?

(15) Do staff know where to advise relatives to get expert help on bereavement?

(16) Are relatives able to stay in touch with the home and its residents after a death if they wish to?


Other residents

(17) Are residents kept appropriately informed about the health of one of their fellows who is dying?

(18) Are residents who wish to able to visit a dying companion, to make some contribution to their care and themselves to get support with their feelings of sadness or fear?

(19) Is there an agreed and sensitive way of informing residents of a death in the home?

(20) Are facilities, including transport and staff escorts if necessary, available for residents who wish to attend a funeral?

(21) Do residents who are unable to attend the funeral have another opportunity to pay their last respects to a dead colleague?

(22) Is bereavement counselling or similar help available to residents?

(23) Are residents who have died recalled - in conversations, through photos in which they appear, by specific items marked in their memory, or in any other way?


Minority groups

(24) Are the wishes in relation to death of any residents from ethnic or religious minorities sensitively discussed with them, noted and respected?

(25) If a detailed knowledge of minority religious and cultural practice is not present within the staff group, is it known where advice can be sought?

(26) When a resident who has requested something different from a conventional funeral dies, is the situation explained to other residents and appropriate opportunities provided for them to participate in mourning?


Staff

(27) Do young and inexperienced staff have someone working with them who can help them to cope with the first deaths which they experience in the home?

(28) Is training made available to staff in ways which help to develop their skills and to cope with the special stress of dealing with the deaths of residents?

(29) Is bereavement counselling or similar help available to staff?

(30) When a resident is close to death is information passed to members of staff who are off-duty who would like to be kept informed?

(31) Are administrative, catering and domestic staff given the opportunity to relate to dying residents if they wish to?

(32) Are all relevant staff given time, and helped with transport if necessary, to attend residents' funerals?


Outside help

(33) Are the priests, ministers or religious friends of residents encouraged to visit if a dying resident wants to see them?

(34) Does the home have links with a hospice in the area?

(35) Is maximum use made of community health services on behalf of terminally ill residents?

(36) Are the neighbours, friends and relatives of a dying resident made welcome?

Tips for those Dying at Home

A Good Death - A guide for patients and carers facing terminal illness at home by Dr Elizabeth Lee, published by Rosendale Press (10 Greycoat Place, London SW1P 1SB, tel 020 7 222 8866), 1995, 188 pages, £8-99 (£1 extra for p&p), ISBN 1 872803 16 4. Review by Nicholas Albery.

This is a truly excellent book that not only patients and carers should read but also doctors, nurses and social workers. In summary, on The Natural Death Centre's booklist, it scores 8 out of 10 overall (no book scores higher) and 4 out of 10 for how academic it is, 5 out of 10 for how spiritual and 8 out of 10 for how practical.

It has many tips that go beyond common sense. Here are a few of them:

# 'How long have I got [till I die]?' This is the question that everyone asks and no one answers. The unwritten code of practice among doctors is to reply, 'I would love to give you an answer but the truth is that no one knows'. ... If you need an answer to this question, you should encourage them to throw caution to the wind and make a best guess. Those that stubbornly refuse to can often be pinned down by your asking 'If it was your mother who was ill like this, how long would you guess?'

# Explain to the professionals caring for you that you would like your selected professional to be your 'key worker' - whether GP, district nurse, social worker or home care specialist nurse.

# If you don't get on with your doctor and find her unsympathetic, try not to say that you find her difficult, rather say something like 'Although I appreciate all you are doing, I find that I am very comfortable with Doctor X, and hoped he might be able to visit me more often'.

# You may have a long list of questions for your GP. It may help to write them down before you see her.

# If you want more information about the quality of care a hospital provides to patients who are dying, you could ask some of the following questions: Does the hospital have a private interview room? What about overnight accommodation for relatives? Do terminally ill patients have the use of special beds - Pegasus beds for example? Have any nurses on the staff completed their ENB 931 continuing care course which gives them special training in the care of terminally ill patients?

# When trying to choose a care home, you could ask the same questions as you would for a hospital (above). Add a simple question like 'Do sick residents have special food prepared or do they share the same menu as everyone else?' The answer may tell you a lot.

# How can one diplomatically keep away unwanted visitors? Restrictions are easier to impose if they are sanctioned by the doctor or nurse: 'I'm sorry but the doctor has said no visitors after eight o'clock,' or 'Nurse insists he must lie quietly after his midday medication and not be disturbed for two hours.'

# One alarming thing after death, if you are not expecting it, is that sometimes there is a slight gurgling or sighing noise of air escaping from the throat or a sudden shifting of a limb as muscles relax.

Dr Elizabeth Lee fully supports The Natural Death Centre's view that, with adequate support, most patients would choose to die at home. As she writes in a letter to the Centre:

'I recently talked to my community nurses about the death of one of their patients at home. She was an elderly widow, very strong minded and cantankerous, so much so in fact that neither her family or neighbours offered any practical support for her at home. She took her own discharge from hospital against medical advice and came home to die alone. In spite of her isolation she was able to achieve the death she wanted. She received a tremendous amount of support from her home help, community nurses, GP and night nurses. She was cared for very well at home and had one-to-one attention for many hours a day. She died peacefully one morning when the community nurse was with her. Although I have not added up the hours that she was alone I am sure it was considerably less than the patients in hospital. Perhaps she knew that by going home to die she would be less isolated and alone than those who die surrounded by professionals in hospital.'

Dr Lee has sensible criticisms of the present system:

# Specialist palliative care services are 'diseasist'. If you are one of the majority of patients dying of something other than cancer you probably will not have access to a specialist nurse.

# The absence of a comprehensive night sitting service is a woeful inadequacy in the care provided to the chronic sick and terminally ill in Britain.

# There are not enough home care assistants.

# In many hospital palliative care beds, couples are not allowed to sleep together or even lie in each other's arms. A woman who pulled the curtains around her dying husband's bed and hopped in to cuddle and hold him, was 'discovered' and chastised by a nurse, who implied that this was definitely unacceptable behaviour.

# Doctors and nurses often avert their eyes and hurry past the bed of someone who is dying. Children in a cancer war were once asked to rank the staff in order of importance to them. The sister, house doctor, registrar and consultant came last. Top of the list was the ward cleaner, followed by the student nurse and the junior staff nurse.

# Deaths in hospital are denied. Ward curtains are drawn around every bed so that no patient is disturbed by seeing the dead body moved away. Compare this to a death in a small hospital in Kenya. The patient's mother stood and raising one arm above her head began to sing a hymn. All the other young women on the ward stood by their beds in their pink hospital nightdresses, faces turned to the dead woman and singing with her mother. They faced her death and they bid her goodbye.

Patients need to be allowed to acknowledge the death of fellow patients and to say goodbye in some way.

# Dr Lee even puts out a call to socially inventive designers. There needs to be, she says, the female equivalent of a male urinal bottle, which can be used lying down.

The Natural Death Centre has many books in its library on care of the dying. This book, however, would be one of my recommended best buys. The other top-scoring books, in my no-doubt biased view, are: The Natural Death Handbook which has more details on aspects such as Living Wills, financial preparation for dying, family-organised funerals and Near-Death Experiences), Coming Home by Deborah Duda (American and more spiritual than Dr Lee's book), Green Burial by John Bradfield, Grace and Grit by Ken Wilber (about the death of his wife from cancer) and Who Dies? by Stephen Levine (on the theme of conscious living and dying).

# Dr Elizabeth Lee, 26 Goldney Road, Clifton, Bristol BS8 4RB.

# For the Natural Death Centre's booklist please send an SAE to 6 Blackstock Mews, Blackstock Road, London N4 2BT (tel 0871 288 2098; fax 020 7354 3831; e-mail: rhino@dial.pipex.com). Or order direct from the book order page.

A Death Plan

A Death Plan
taken from The Natural Death Centre

About a third of us in the UK get around to making a Will, which specifies our wishes for what should happen after our death, as regards our funeral and our children and our possessions. A tiny percentage make an Advance Directive or Living Will (available with a Death Plan, and an Advance Funeral Wishes form from The Natural Death Centre for £7 per set; order securely online by credit card) stating how much medical intervention we want when dying. But hardly anyone makes a death plan, similar to a birth plan, saying what they would ideally like in terms of atmosphere and environment as they lie dying. Of course no one can be sure how they will die or whether such a plan in the event will be of any relevance, and they may change their minds when the time comes; but nevertheless, a death plan may help friends and relatives to know one's orientation and wishes.

In the hope of encouraging readers to improve on the following list, or to send in their sample filled-in versions of this list, or to write a list of their own, here is a first attempt at a death plan. [Separate sheets can be used for longer responses, using the numbers below to refer your reponses back to. Underline or tick or cross out or amplify as relevant. This form can be photocopied.]

(1) If my condition is terminal I would like to be told the full details / plus implications of treatment and non-treatment / a summary / not to be told at all / other [specify].

(2) If possible, I would / would not like the doctor to tell me a guess as to how much time I might have left, between best and worst cases, and on average.

(3) I imagine I would / would not like every effort to be made to find alternative medicine and approaches / latest medical breakthroughs that might give me a miraculous last-minute remission.

(4) I have / have not made an Advance Directive, specifying how much high tech medical intervention I wish for when dying and whether or not I wish to be force fed [if yes, the location of this AD].

(5) I imagine that I will / will not choose to fast as death approaches.

(6) If possible, when I am dying I would like to be cared for at .................................... [location, whether hospital, hospice, at home, indoors, outdoors, etc].

(7) I would like to be surrounded by .................................... [flowers, nature, photos, mementoes, etc].

(8) My next of kin is [name, address, phone number].

(9) If I go into hospital / when I die, what I would like to happen to my pets is ................................... .

(10) I would / would not like for close relatives / friends / everyone to be told that I am terminally ill.

(11) Those friends or relatives who I would most like to be involved in my nursing care are .................................... .

(12) I would like .................................... to be able to sleep in the same room / bed as me.

(13) I may change my mind, but I imagine I would / would not like visitors when near the end. The ones I would particularly like to visit me include .................................... [give addresses and phone numbers if necessary].

(14) I would / would not like to be left as alone as possible when dying.

(15) I imagine that I would / would not like to discuss the fact that I am dying with these visitors, and would / would not like to make explicit the possibility that these are final goodbyes.

(16) My religion / spiritual practice / philosophy is mainly .................................... and therefore for my dying I would like .................................... .

(17) Depending on my medical condition and feelings at the time, the kind of ministrations I might appreciate when dying include:

(18) Music. My favourite pieces would be ..................................... [state specific music or broad range].

(19) Live singing, chanting, hymns, psalms, particular prayers or texts, etc [as specific as desired].

(20) Physical contact [eg hand held].

(21) Massage.

(22) Aromatherapy [or other such approaches].

(23) The person(s) I would most like to be there at the moment of my death is / are .................................... .

(24) I would like to be as conscious / unconscious as possible as I die, and would like pain control treated accordingly. The drugs I imagine I might appreciate include .................................... [specific or class of drugs].

(25) For the moment of my death I would / would not like all life support machinery and monitors disconnected from my body.

Signed by:

Name

Signature

Date

This signing is witnessed by the two undersigned, neither of whom stand to benefit from the signatory's Will:

Name of first witness

Signature

Witness's occupation and address

Name of second witness

Signature

Witness's occupation and address