International Association for Hospice and Palliative Care
Subject: IAHPC Newsroom 2005; Volume 6, No 7, July
William Farr, PhD, MD
Liliana De Lima, MHA
Layout and Distribution
Dear Members and Colleagues:
The July issue of the IAHPC newsletter is now on our website at URL:
To send an email to one of the IAHPC Newsletter team members,
visit the following page http://www.hospicecare.com/contact.htm
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In this issue:
Until next month!
Kathleen Foley, MD
William Farr, PhD, MD
Message from the Chair
and Executive Director
Kathy Foley, MD
Liliana De Lima, MHA
In response to a growing need for tools to address policy and advocacy issues, we have added a new page in the IAHPC website listing some which we hope you will find useful. To access these tools, go to www.hospicecare.com, click on Resources, then select Policy and Advocacy Tools. If you know of an advocacy or policy document not listed in this page, please let us know. We want to bring as many resources as possible to you so that you have the tools at hand to make things happen in your countries and communities.
We are glad to announce that this month we have funded the following palliative care workers through the IAHPC Traveling Scholarship Program:
• Dr. Gayatri Palat, from Amrita Institute of Medical Sciences in Kerala, India is now visiting the Palliative Care Department at the MD Anderson Cancer Center in Houston.
• Dr. Jorge Eisenchlas, from Argentina is now in the UK, participating in the Research Seminar at the International Observatory in End of Life Care at Lancaster University.
• Doctors Reena George and Jacob Alexander from the Christian Medical College in Vellore, India will be traveling to London to participate in the 7th International Course on Grief and Bereavement.
We are proud to be able to support these exceptional and committed individuals and hope that their new knowledge and acquired skills will help them improve patient care in their countries.
For the past few months we have been working on our Website, including the redesign of some pages to improve its navigability and functionality. Now ready is the IAHPC International Directory, which features tools such as Recent Listings and a Search engine to facilitate locating a hospice or palliative care unit in any country in the world. Some countries are still being updated, but please visit the directory and check the listings to see if your program is included. If it’s missing, use the submission form to add, correct or update the information. You can see the directory by going to www.hospicecare.com and clicking on International Directory on the top navigation bar. We are very grateful with Anne Laidlaw and her team at Alou Web Design for their hard work and dedication in making this possible.
Several of you are now receiving the donated Oxford Textbook of Palliative Medicine we sent some weeks ago through the IAHPC Clearing House Program. We are very touched by the many letters and thank you notes and we are glad you will be using the book extensively. Some of the testimonials are included in this newsletter and can also be seen in the Testimonials page in our website in http://www.hospicecare.com/clearinghouse_testimonials.htm Also, thanks to the latest donors to the IAHPC Clearing House Program: Dr. Susan Krauter from Houston; Ms Sandra Lee Schaefer, from Pittsburgh; Ms Deanne Emmons, from Berkeley; the Hospice and Palliative Nurses Association; and Ms. Pamela Bennett, from Purdue Pharma. Medical and nursing journals are extremely expensive and very limited in developing countries. Through the support of these generous individuals and our Clearing House Program, IAHPC is now able to distribute them around the world.
There are many ways in which we support programs around the world, but we also need your participation to be able to continue helping others. If you are not a member of IAHPC, please consider joining or donating to any of the IAHPC programs. Our ability to help is limited by the amount of funds we are able to raise throughout the year. We keep a small office and very low administrative expenses to maximize the amount of monies we are able to transfer to programs for patients and families in developing countries. Your participation is extremely important in making this possible. If you need information on how to donate or partnership with IAHPC in any of our initiatives, please contact us.
Until next month,
Kathleen Foley, MD
Chair, Board of Directors
Liliana De Lima, MHA
Article of the Month
Carla Ripamonti, MD
Should patients with advanced, incurable cancers ever be sent home with total parenteral nutrition?
A single Institution’s 20-year experience.
Author(s): Hoda D, Jatoi A, Burnes J, Loprinzi C, Kelly D.
Abstract: Cancer 2005; 103:863-8
This article is not an randomized clinical trial (RCT) on the use of Total Parenteral Nutrition (TPN) in advanced cancer patients, but it is the Mayo Clinic’s 20-year experience of their patients with incurable metastatic disease who had TPN initiated in the hospital and who continued to received it in the out-patient setting.
The role of TPN in advanced cancer patients is still controversial. Because of RCTs which did not reveal the expected benefits of TPN in advanced cancer patients, the American College of Physicians took a stand by publishing a consensus statement. This statement advised that the routine use of parenteral nutrition should be discouraged in patients undergoing chemotherapy and that when it is used in cancer patients with malnutrition, physicians should consider the possibility of increased risks (Ann Intern Med 1989;110:734-6). However, in daily clinical practice, TPN is sometimes begun in advanced patients during hospitalization and then continued at home.
The Authors identified all patients with any type of incurable cancer, cared for at Mayo Clinic from 1979 to 1999 and thoroughly reviewed the clinical charts of the patients on TPN at home. In fact, patients followed at home permit identification of long-term survivors and excluded patients in the terminal phase who received TPN for a short period during their stay in hospital. The Authors evaluated: 1. what was the clinical situation which brought about the initial use of TPN? 2. what was the interval between diagnosis of metastatic disease and initiation of TPN? 3. what was the survival rate of these patients? and 4. How many patients survived one year or more? They tried to identify factors which would predict a longer survival among TPN treated patients (for example, were they patients with low-grade tumours or not painful cancer, or were they patients on CH, H, RT that were considered to live longer with respect to other patients with dyspnea or pain at the time of TPN initiation?).
372 adult patients with incurable cancer were identified during the period under investigation and 52 of them (median age 56 years, 30 women) received TPN at home. Most of these patients had GI cancers, ovarian cancer, carcinoid and amyloidosis. The most common reasons for TPN initiation was malabsorption, obstruction of the alimentary tract or fistulas.
Seventy-one percent of the patients had lost > 4.5 Kg before TPN initiation and in 48% of the patients the surgical service initiated TPN in consultation with the home TPN service.
Thirty two patients (62%) initiated TPN less than 1 year from the time of the diagnosis of metastatic cancer, while 19 patients the interval was greater than 1 year. Thirteen patients had symptoms of pain or dyspnea at the time of TPN initiation. Seventeen patients were on oncological therapies (15 CH, 1 RT, 1 H).
The median time from initiation of TPN to death was 5 months (range 1-154 months). Sixteen patients survived > 1 year. For most of the patients, TPN was stopped because of death. Five patients lived from 1 to 3 years after TPN cessation (1 pt with sarcoma, 1 with amyloidosis, 1 with ovarian cancer, 1 with pancreatic cancer, and 1 with esthesioneuroblastoma). The potential predictive variables examined (tumour grade, the interval between diagnosis of metastatic disease and TPN start, the presence of severe symptoms, and the administration of cancer therapy after TPN) were not associated with overall survival. TPN related complications included 18 catheter infections (1 per 2.8 catheter-years), 4 central venous thromboses, 3 pneumothoraces, and 2 episodes of TPN-related liver disease.
Why I chose this article
The use of TPN in advanced cancer patients with incurable cancer is still a controversial issue in both the oncological as well as in the palliative care settings. This study is the largest retrospective study of patients with metastatic incurable cancer who received TPN after a careful evaluation.
The results of the study demonstrat that, in selected patients with rare tumoural pathologies such as carcinoid/islet cell tumours, amyloidosis, abdominal tumours which cause malabsorption or mechanical GI problems, even though they have incurable cancer, TPN may be beneficial and they can live many months with acceptable TPN-related complications.
The results of this study cannot be applied to all patients with incurable cancer and nutritional problems.
Carla Ripamonti, MD
Member of the Board of Directors, IAHPC
Please visit the following link to read past Articles Of The Month:
Roger Woodruff, MD
SUPPORTIVE CARE FOR THE RENAL PATIENT
Oxford Supportive Care Series
E. Joanna Chambers, Michael Germain and Edwina Brown (Eds)
Oxford University Press, 2004
RRP £49.95, $US95.00.
More Info & Purchase
Supportive care is the multidisciplinary holistic care of patients and their families from the time of diagnosis, through treatments aimed at cure or prolonging life, and into the phase currently acknowledged as palliative care. In simple terms, it is the application of the holistic multidisciplinary approach to care that is known so well in palliative care, applied earlier in the course of the patient’s illness.
The opening chapters deal with the need for this type of supportive care for patients with end-stage renal disease (ESRD) and how to make it happen. The clinical practice guideline developed by the Renal Physicians Association and the American Society of Nephrology regarding decision making in end-stage renal disease is particularly instructive. There are useful chapters on the control of symptoms related to both the renal disease and to co-morbidities. These chapters and the separate chapter on the management of pain contain a number of useful tables for the adjustment of medication doses in ESRD. There are chapters that discuss advanced directives, health-related quality of life, psychological and psychiatric considerations, sexual dysfunction, and spiritual care. The closing chapters deal with traditional palliative end-of-life care for patients with ESRD.
The introduction of this type of supportive care earlier in the course of the disease for patients with ESRD is long overdue and this book should be required reading for anybody training in nephrology. It certainly should have a place on the library shelf in any dialysis unit. It will also be useful to people who work in palliative care, as it will allow a better understanding of the particular problems and symptoms patients with ESRD bring to palliative care. The chapters on symptom control and the information about medication adjustments are particularly useful.
Founder of the Hospice Movement
Selected Letters 1959-1999
David Clark, Editor
Oxford University Press, 2005
RRP £19.95, $US39.50
More Info & Purchase
I reviewed this wonderful book when it was first released in 2002. <see review> OUP have now issued a more affordable paperback edition.
It remains highly recommended.
ORAL CARE IN ADVANCED DISEASE
Andrew Davies and Ilora Finlay (Eds)
Oxford University Press, 2005
RRP £39.95, $US75.00
More Info & Purchase
This is a welcome book given the enormous effect that oral pathology can have on the quality of life for patients with advanced disease. The introductory chapters provide a clear description of oral assessment and oral hygiene, following which there are chapters on the various types of infections and some of the common symptoms including taste disturbance, halitosis and pain. The closing chapters deal with oral complications of cancer therapy, HIV/AIDS, chronic neurological diseases, and paediatric problems.
The book is comprehensive in scope and is well set out and there is a special section with 38 colour photographs that are particularly useful. However, I was a little surprised to see no mention of the cytoprotective agent, amifostine. Even if it is not yet available in the UK , I would have thought the published results of the randomized controlled trials are impressive enough to be mentioned. The increasing number of reports of osteonecrosis of the jaw associated with bisphosphonate therapy (particularly zoledronic acid) also escapes mention. But these quibbles aside, this book will be a useful addition to the library shelf in the palliative care unit where I work.
A Guide to Enabling a Good Death
Radcliffe Publishing 2004
RRP £21.95 $US 39.95
More Info & Purchase
This is the second edition of Julia Neuberger’s book that was first published in 1999. The order of the material has been shuffled a bit and the discussion has been expanded and brought up to date with the discussions that are occurring in both professional and lay societies.
As for the first edition (although the order has been altered), ‘I found out about the origins of the attitudes to death and bereavement with which I grew up; I learned about the teachings and customs regarding death of the world’s major religions and how palliative care professionals can best deal with them; I was treated to an erudite discussion on the meaning of a “good death”, covering everything from common sense to euthanasia; and how we, whether we are health care professionals, family members, clergy, or friends, can help achieve it; and finally, a description of our society’s approach to grief and bereavement that does not shy away from pointing out what is wrong and why.’
Reading this book will be both enjoyable and beneficial to anyone who works in hospice and palliative care.
THE PAIN SYSTEM IN NORMAL AND PATHOLOGICAL STATES: A PRIMER FOR CLINICIANS
Louis Villanueva, Anthony Dickenson and Helene Ollat (Eds)
IASP Press 2004
More Info & Purchase
This book is a comprehensive review of pain mechanisms for both teachers and clinicians. It aims to present the key molecular, anatomical, physiological, and pharmacological studies on the basic science of pain mechanisms in a manner that is more easily understood by practicing clinicians and teachers.
The book is divided into five parts. The first deals with peripheral nociceptive inputs to the dorsal horn. The second part looks at the consequences of injury at the dorsal horn level. The third part is devoted to the anatomical and functional organization of ascending pain pathways. The fourth deals with the role of other endogenous neuronal mechanisms in pain processing. The last part relates to preclinical and clinical approaches to novel therapeutic strategies.
There is a lot of information in this book and I was left wondering how much of it would in the future become relevant to the clinical syndromes I treat. This clinician also felt that the more liberal use of conceptual diagrams would have been helpful. However, the book largely meets its goals and will be of interest to anybody wanting an in-depth and up to date review of what we know about pain mechanisms.
CARE FOR THE JOURNEY
Messages and Music for Sustaining the Heart of Health Care
Michael Stillwater and Gary Malkin
A Wisdom of the World Production, 2005
RRP $US 19.95 plus shipping
Available from www.careforthejourney.net
From the creators of Graceful Passages, Michael Stillwater and Gary Malkin, Care for the Journey is a wonderful compilation of music with inspiring and insightful messages for the practising health care professional. It acknowledges the stresses under which we work and takes us a step back to the real meaning of healing and caring, which includes the emotional and spiritual dimensions of both patient and practitioner; it accepts death as the natural end of life.
This CD would be a useful resource for any health care practitioner, but I think it will be particularly valuable for anybody who works in palliative care. If you are feeling in any way stressed, or wondering about the meaning and value of your work, you need to listen to Care for the Journey.
Medical Oncologist and Director of Palliative Care,
Austin Health, Melbourne, Australia
Two reports of interest concerning palliative care in Sub-Saharan Africa.
The first report is highlighted by a press release from King’s College , UK which sets the stage for the problems facing this region overwhelmed by patients with HIV/AIDS; the second is a comment by workers in the region who deal with these problems on a day-to-day basis. Both full text reports are available online from The Lancet –see the details below.
1) A Press Release from King’s College, UK
"Africa needs improved palliative care for HIV/AIDS With an estimated 26 million people living with HIV in Sub-Saharan Africa and over 2 million deaths relating to the disease every year the need for palliative care in the region is great. Researchers from King's College London have assessed the current availability of care and revealed that the care burden primarily falls on family members and local communities, who are 'often inadequately trained in clinical skills and lack access to essential drugs."…
Professor Irene Higginson and Dr Richard Harding, who published the results of their review in the latest edition of The Lancet, stress that in order to provide feasible, accessible and effective models of palliative care in Africa , questions on how the models of care used in developing countries can be adapted to the different setting must be resolved…
The South African government has already recognised how valuable traditional healers could be as a bridge between patients in the community and more formal palliative care initiatives. These healers are often the first port of call for patients with both cancer and HIV/AIDS, and it seems that patients who visit them are more likely to stick to pain-relief medications. However, offering training to these healers alone is unlikely to be sufficient to satisfy the massive need for palliative care…
According the researchers, one way of improving the situation would be to expand provision of simple protocols for basic palliative care procedures to volunteer carers. Some organisations, such as the World Health Organization, have already begun to do this. Greater numbers of community volunteers, such as those at Hospice Africa Uganda, could also be trained to identify and refer patients who would benefit from palliative care services, as stigma can prevent patients with HIV disease from referring themselves to hospices…
A major problem for care givers in Africa is the poor access to essential drugs, with only a third of the population able to obtain these. In addition, there is a high mortality rate among trained health care professionals, with one in four hospital healthcare workers in Malawi being lost to AIDS and TB every ten years.
A further issue is that anti-HIV drugs, or highly-active antiretroviral therapy (HAART), are associated with a range of distressing side effects, which mean that palliative care is required even as HAART is rolled out across Africa .
According to Dr Harding, 'a common misconception is that HAART replaces the need for palliative care. However, despite the therapy, pain continues - and the psychological and spiritual needs of people with HIV persist. Effective HAART programs require palliative care to ensure adherence to the therapy to maximise clinical benefit and reduce the potential for the emergence of resistant strains.'
Currently, few palliative care services in Africa have integrated with HAART provision, although some examples of palliative care alongside anti-HIV treatment are emerging, enabling patients to maximise the quality of their life and their death.”
“This press release is based on the following article:
“Palliative Care in Sub-Saharan Africa ”
Richard Harding, Irene J Higginson
The Lancet, 4 June 2005; Volume 365: pages 1971-77”
The full text of this review may be viewed on The Lancet online Web site which requires a free registration at URL: http://www.thelancet.com/home click on review after logging into the past issue of 4 June 2005.
2) "Palliative care in Africa: an appraisal"
by Dr. Anne Merriman and Manjit Kaur of Hospice Africa, Uganda. This report is in the same issue as above (The Lancet, 4 June 2005 ; Volume 365), but must be viewed under the section termed Comment.
Introducing an Organization of Palliative Care in Sichuan University
Sichuan is the largest and developing province in China , with a population of over 98 million. There are 330,000 medical units at all levels; there are 190,000 beds which complement the medical services for the whole province; there are 310,000 health professionals providing medical services.
Chengdu is the capital of Sichuan and has a population of 12 million. It is the largest city in southwest China . Medical Central (formerly West China University of Medical Sciences) of Sichuan University has 7 colleges with about 15 thousand medical students. There are six university hospitals with over 6000 beds in total.
The pioneer work of Palliative Medicine in Sichuan of China and the practice unit
With the progress of Gerontology /Geriatrics programs, the Chinese Medical Board (CMB) in Chengdu sent a doctor named Dr. Jinxiang Li to the United Kingdom to learn palliative care in May 1995. He studied under Dr. Robert Twycross in Sir Michael Sobell House, and received a lot of support from the Oxford International Centre for Palliative Cancer Care (OICPC).
Since 1997, three additional medical staff were supported by OICPC and were sent to Sir Michael Sobell House. They are Dr. Jin Wu (1997), Dr. Yuenlin Yang (1998) and Miss Shenmei Lai (1998). They are now the pioneers in the development of Palliative Medicine in Sichuan of China and form the base team of palliative care in Chengdu.
In 1996, after Dr. Jinxiang Li returned to China he began his first palliative medicine team in Chengdu and set up a clinical practice unit in his hospital. In 1996, Dr. Li established 7 beds for the practice of palliative care in the department of Geriatrics in the fourth University Hospital, West China University of Medical Sciences (WCUMS), and in 1997 expanded it to 10 beds with a team of 2 doctors and three nurses.
In October, 2004 a unit (a hospice) with 22 beds was founded and a special team of 4 doctors and 6 nurses formed. We have provided the services not only to the patients with advanced cancer, but also to the patients with other terminal illnesses such as motor neuron disease, dementia, renal failure, post-stroke, COPD, heart failure and high aged person (>90). There are always 30 patients needing admission to these 22 hospice beds.
These early accomplishments were performed by pioneers who have been promoting the development of palliative medicine in Sichuan of China.
Dr. Jinxiang Li
Director Palliative Care Program
Editor’s Note: The formulary for these practice units lists the following opioids:
MST 30mg (sulphate) / a tablet, morphine 10mg for injection
TD fentanyl 25mg, 50mg/ patch, and injection preparation.
tramadol 50mg, 100mg / a tablet
pethidine 50mg 100mg for injection
codeine 8mg tablet
oxycodone 10mg / a tablet
naloxone 0.4mg for injection
Additionally, there is a very large selection of adjuvant medications for pain and symptom control.
Focus on pharmaco-economics:
an Indian exercise
M.R. Rajagopal, MD
A six-day “Training the Trainers” program for palliative care physicians was held in Mumbai in January 05 (reported in IAHPC newsletter). At this program, a competition was announced to the participants. The competition was an academic exercise in proper preparation of teaching materials, the optimal use of visual aids and the provision of adequate back-up material.
Choice of subject:
The choice of the subject, “Pharmaco-economics,” was deliberate. Too often, the teaching of symptom control in palliative care focuses on available therapeutic options with scant consideration of cost. In the Indian context of a lack of a social security system (which I believe could be true for many developing countries), the cost of treatment can actually worsen the quality of life for patients and families. Families go into debt; children drop out of school and by the time the patient dies, the family may even be homeless. Doctors seldom think about this, and often the choice of a drug, or treatment modality, is dictated by the salesmanship of the pharmaceutical industry. We felt that the more this matter is discussed, the better it will be for our patients.
The entrants submitted a PowerPoint presentation designed for a 40 minutes’ teaching session along with a hand-out in the form of a word document. The entries were evaluated by a team of judges – Dr Ram Narayan from the department of Medical Education from Manipal , India , Dr Reena George, editor of Indian Journal of Palliative Care from Christian Medical College , Vellore , India and Dr Robert Twycross from Oxford who was the course chairman.
We congratulate the winners:
- Dr M.M. Sunilkumar, Amrita Institute of Medical Sciences, Kochi ([email protected])
- Dr Anand Krisha Gudur, Belgaum Cancer Hospital , Belgaum , Karnataka ([email protected])
- Dr Mallika Tiruvadanan, Laxmi Palliative Care Trust, Chennai ([email protected])
The first winner will receive a prize sponsored by Dr Robert Twycross.
Maureen Gill Honored
Maureen Gill was recently honored by two British organizations for her important contributions in Eastern Europe. Ms. Gill was the IAHPC Traveling Fellow to Siberia last year (insert URL to her report). We congratulate Maureen for her accomplishments and honors and recognize her dedication to improving palliative care in the developing world. Excerpts from the press releases are below.
“Maureen Gill, Nurse Consultant in Palliative Care recently received the Palliative Care Nurse of the Year Award from the Government's Cancer Czar, Mike Richards.
The award, the first of it's kind, was sponsored by Macmillan Cancer Relief and the International Journal of Palliative Nursing.
Maureen scooped the award for her ground breaking work in the specialty worldwide. Her special project, over almost 10 years, has been to establish and advance hospice services in Siberia, Russia.
Maureen was commended by the panel of judges for her ability to face the challenges in Palliative Care in countries where it was previously unknown.
They agreed that Maureen has shown great courage, high moral and ethical standards where corruption is still rife and a part of everyday living.. The panel added that Maureen's work is challenging, pioneering and often risks personal safety.
Maureen continues her work in the UK as a Clinical Supervisor, Visiting Lecturer and Napp Pharmaceutical Trainer.”
Maureen Gill, Nurse Consultant in Palliative Care, was recently honored by the Beacon Fellowship. This charitable UK organizations aim is to raise the profile of philanthropy by awarding the Beacon Prize to those who "by giving time, money and/or expertise to the community at large thus inspire others to do more…
Maureen's work in developing end of life care mainly in the Eastern Block gained a "Highly Commended" category… Maureen herself was awarded in the Leadership Category and was second runner up only to Sir Bob Geldorf.
The Beacon trust said " the judging process was extremely difficult--Maureen Gill's achievements are truly remarkable"
Maureen, who is on the Editorial Advisory Board of the Nursing Standard's Cancer Nursing Practice works freelance for groups such as the South Bucks Hospice, The Clare Maxwell Hudson School and Napp Pharmaceuticals. Her Palliative Care overseas contributions continue in both Siberia and Romania with a lecture trip to Sweden planned for later this year.”
Contributions by IAHPC
We are adding this new section to the Newsletter and invite our readers to submit articles they think may be of help to patients, families and care givers. All articles must be related to palliative/hospice care and bereavement, etc. We do not promote products or services. Contributions may be internationally applicable; however, some may be regional in scope and usefulness.
Articles may be submitted to the editor through this website click here; they should be approximately 700 words, be totally original and not published elsewhere. Submissions will be reviewed by the publication committee for approval.
Submit here: http://www.hospicecare.com/forms/editor.htm (New window will open)
The opinions expressed in these articles do not reflect those of IAHPC and we are not to be held responsible or liable for them.
Death the Ultimate Loss -
How to help a friend in their grief
I remember returning to work after my mother died. Suddenly every door to my coworker's offices was tightly shut. Hardly anyone mumbled a word to me. There was no card. There were no flowers. No hugs. There wasn't even a kind word from 95% of them. Interestingly, these people were all in the human service field with years of counseling in their background. They were all women.
This group liked to talk. They lived to "process their feelings" at endless staff meetings. This was normally a very "touchy feely" group. But bring death into the mix. Wow. That sure shut them up.
Death is uncomfortable. We don't know what to say. So unfortunately we say nothing. This is the worst possible thing you can do.
In the following weeks after my Mom died, the thing that surprised me the most was the reaction from others. Friends didn't send cards. Phone conversations went dead silent the minute I told callers my Mom died. I never received a single flower from a personal friend. I was one of the lucky ones, because I did have at least a couple of friends who called & were very kind and let me cry endlessly. Without that support I am not sure what I would have done.
The grieving person feels shocked, afraid, depressed, suicidal, hopeless, and angry. Don't let these feelings scare you. They are normal.
In thinking about people's lack of reaction, I thought how interesting this was because death isn't a freak occurrence. Given that the one thing we are guaranteed in life is death. It strikes me as odd that people don't know how to react to it. I thought what if someone gave a primer on WHAT TO DO WHEN A FRIEND LOSES A LOVED ONE 101?
- Always send a card. It hurts so much worse to not be acknowledged.
- Send a single flower, a plant, or a bunch of daisies. It doesn't have to be costly. Your friend will appreciate the thoughtfulness of the gesture.
- Bring food. This is so helpful.
- Don't think if we "bring it up" that they are going to get upset. They are already upset. So "bring it up". The alternative is ignoring the death and that is significantly worse.
- Call and 'check in" on your friend. It is OK to say, "I am so sorry your Mom died". Your friend will appreciate this. Then call them every week. If this is wildly outside your comfort level, then at least leave them a message on their home answering machine telling them that you are thinking of them.
- Understand that your friend may isolate themselves. They probably do not want to be cheered up.
- Ask your friend "What can I do for you?" They may need you to just listen, they may need you to call and know that you care.
- Make sure you are specific. Please don't say, "I'm sorry for your loss" Say "I'm sorry Pat died". It is always better to use the person's name. It is more personal.
- If you are grieving for the deceased person say that. Say for example "I will miss your Mom also, she sure was special". It helped me to know that other people miss her as much as I do.
- Know that grieving isn't something that ends in 6 months, or a year. People have the subliminal attitude such as "Aren't you over it, it has been a year already?"
- Send them a book on grief. That helps. Really.
- Don't overlook the child, or teen, that is grieving, they are just as hurt and confused, as you would be. There are books written especially for them.
- Go to the funeral to support your friend. They will never forget that you showed up. You do not need to have known the deceased.
- It is ok to say; "I don't know what to say".
- Offer to pick up the children. Offer to finish that report. Offer to pick up the dry-cleaning. Often they feel helpless to take care of the mundane tasks.
- Be extra sensitive for milestones. Acknowledge that it's been one year since the loved one died. Be aware that it’s Mothers Day & the person is feeling especially alone. Or, Valentines Day for the loss of a partner. Or, the deceased persons birthday. Or, the first Thanksgiving without their family member or friend.
- Your friend may be angry with God, the world, and the deceased. This is normal.
- Be aware they may feel guilt.
- Tell stories about the person who died, they are cherished.
People think that death is contagious. It is not.
- "They are in a better place".
- "You need to see a therapist". They already feel low; they don't need your implication that they are crazy too, or that their grief is inappropriate.
- "Aren't you over it?" The pain takes years to subside.
- "You are lucky you still have a husband" (or children) or whatever. They do not feel lucky.
- "You will get over it". You never get over it.
- "Thank God I still have my Mom, I don't know what I would do". This is extremely insensitive.
The second year after a death is very hard because everyone thinks it is behind you, however you still need the support.
Your silence tells your friend that their loved ones' life was not important.
After a death we feel lonely. It is an aloneness that goes so deep. If you ever needed a friend it is now. To ignore your friend when they need you the most is the ultimate social shunning. One day, you too will experience a profound loss, consider how you would like to be treated.
Julie is a professional Speaker in Denver on Anger in the Workplace and Improv Comedy as a team builder. Julie is also a college professor.
Ms. Ireland can be reached by sending a message to the Editor of this Newsletter
IAHPC What's New?
The Department of Pain Medicine and Palliative Care at Beth Israel Medical Center, New York, is pleased to announce the redesign of its website.
Visit at: www.StopPain.org.
The American Psychosocial Oncology Society Announces a New Online Education Program
The American Psychosocial Oncology Society (APOS) is excited to announce its newest online education program, Cancer 101 for Mental Health Professionals now available on the APOS website, www.apos-socie_ty.org
This, free, continuing education program features four presentations to educate mental health professionals about cancer, its treatment, and common symptoms and side-effects:
Cancer Overview: Part I
Cherie Andrews, RN, C., M.A., OCN®
Paul Jacobsen, PhD
Moffitt Cancer Center
Cancer Overview: Part II
Cherie Andrews, RN, C., M.A., OCN®
Paul Jacobsen, PhD
Moffitt Cancer Center
Palliative and Supportive Care
Michael A. Weitzner, MD
Helios Pain & Psychiatry Center
Cancer Pain Management
Jennifer M. Strickland, PharmD, BCPS
Helios Pain & Psychiatry Center
This program is jointly sponsored by the University of South Florida and APOS, with support from the Individual Cancer Assistance Network (ICAN), a philanthropic program of the Bristol Myers-Squibb Foundation designed to build community-based cancer counseling capacity to serve patients and their families. The program has been developed through a generous educational grant from the Bristol Myers-Squibb Foundation.
APOS is also pleased to announce an exciting, new partnership with the National Association of Social Workers (NASW) to offer continuing education social work contact hours to NASW members free of charge for the first three presentations in this program. The National Association of Social Workers is proud to offer this continuing education program to its members to increase awareness of the complexities surrounding the care for patients with cancer. A limited number of continuing education certificates are available free of charge if you are a member of NASW. Please have your member identification number ready when you register to receive your credit.
Each presentation has also been accredited by the University of South Florida . Formal continuing education credits are available free (until June 2006) for psychologists, social workers (for non-NASW members), marriage and family therapists, and mental health counselors.
Please visit www.apos-society.org to view the presentations and complete evaluations and CE tests.
Elliott Graham, Executive Director
Allison Ball, Project Manager
American Psychosocial Oncology Society
2365 Hunters Way
Charlottesville , VA 22911 USA
E-mail: [email protected]
New Website of the National Council for Palliative Care (NCPC) in the UK
The NEW and recently launched National Council Website (www.ncpc.org.uk) has beaten an all time (internal) record by receiving over 10,000 hits in just 3 weeks.
The new site (designed and developed by Creatiscope Design) is an excellent source of information providing up to the minute news from the world of palliative care. There are fully redesigned areas on Policy, Publications, Subscriptions and Ethics and to mark the 10th anniversary of the National Council calculating Minimum Data Sets (MDS), the MDS forms are online for the first time, enabling service providers to complete and submit their forms online.
The site has been designed to promote NCPC’s new name, new direction and work of the four newly formed Policy Groups. Each Policy Group (Cancer, Circulatory and Respiratory Conditions, Neurological Conditions and Older People Policy Group) is represented on the site by its own section with weekly updates providing responses to national debates and highlighting current NCPC policy work.
The National Council for Palliative Care is the umbrella charity for palliative care in England Wales and Northern Ireland. Its mission is to promote palliative care for all who need it. It promotes the extension and improvement of palliative care services in all health and social care settings and across all sectors to government, national and local policy makers.
Enhancing end-of-life care in long-term care facilities:
Educational materials from the Swedish Medical Center, Seattle, Washington, USA
We received a federal grant from the National Institutes of Health (NIH) to develop an educational program called PERT (Palliative Care Education Resource Team). The goal of the PERT Program is to enhance end-of-life care in long-term care facilities. To achieve this goal, the PERT Program has developed a comprehensive curriculum of educational materials and resources, aimed at enhancing the skills of nurses and nursing assistants who provide end-of-life care.
We now have made these educational materials freely available on our
These materials have been shown to be quite valuable for staff development coordinators, nurse educators, and others who provide education to nurses and nursing assistants. We are working to increase awareness of the resources we offer.
Swedish Medical Center
Meetings and Courses
2006 American Academy of Hospice and Palliative Medicine and Hospice and Palliative Care Nurses Association’s Annual Assembly
February 8-11 2006 in Nashville , USA
Call for Proposals for Papers and Posters
Deadline for submissions is August 1, 2005
The program planning committee seeks paper and poster proposals highlighting research or a case study in the following topic areas:
• Systems of Care
• Clinical Outcomes
• Therapeutic Trials
• Health Services Research
• Educational Research
• Hospital Based Case Presentation/Clinical Vignette
• Community Based Case Presentation/Clinical Vignette
• Basic Science/Symptom Pathophysiology
To submit your paper, poster, and case study proposals click on http://aahpm.confex.com/aahpm/2006/
Multi-Professional Course – 7-18 November 2005 St. Christopher’s, UK
An opportunity for any experienced health or social care professional to work together on exploring key principles and current issues. The course will enable members to develop greater confidence in the practice of their palliative care skills within their own specialty and in multi-professional teams; appreciate the latest evidence and thinking in palliative care; and develop a network of colleagues nationally and internationally.
A limited number of bursaries are available for applicants from developing countries or those with a financial need. Application close on 29 th July 2005.
The course includes the Multi-Professional week and in addition a clinical attachment provides an opportunity to see palliative care in practice. Students will be encouraged to reflect on the personal, interpersonal and cultural issues that arise during the two-week course.
For more information and the application details, contact Anne Coret, International Education Officer
Phone: (+44) (0) 208 768 4656
Fax (+44) (0) 208 776 5838
Email: [email protected] or [email protected]
Programa de Tratamento da Dor e Cuidados Paliativos
Hospital of the Universidade Federal do Rio de Janeiro , RJ, Brazil
Deadline for application: July 20th, 2005
Training will start in August. It lasts one year and it is necessary to be there 2 days a week for group discussion, formal teaching and clinical practice. The course is free.
The certificate is given by the Educational Activities Coordination of the University.
Open to international students
For information, contact Dr. Lilian Hennemann
Email: [email protected] or Phone: 55+21+25622713.
7th Annual Josefina Magno Conference Series:
"Improving Care for Those Experiencing Life-Limiting Illness"
The Institute for Education and Leadership at Capital Hospice presents this conference.
November 8-9, 2005
Fairview Park Marriott
Falls Church, Virginia
"Evidence-Based Palliative Care in dementia"
November 7, 2005
Jointly Sponsored by the Alzheimer's Association National Capital Region
With all the advances in diagnosis and treatment, people with serious chronic illness are living longer than ever. This year's Josefina Magno conference demonstrates why palliative care is a critical component of excellent care for people with life-limiting illness. With case-based presentations, reports on the latest research and treatments, and practical training participants will again have an unparalleled opportunity to advance their personal knowledge as well as the art and science of palliative care.
The conference brings an international group of exceptional clinicians and researchers who will focus on cased-based presentations, and highlight the current state of research, practice, and outcomes that inform the palliative care model.
Featured speakers include Eduardo Bruera, MD from MD Anderson Cancer Center in Houston, R. Sean Morrison, MD from Mt. Sinai Medical Center in New York, Balfour Mount, MD from The Royal Victoria Hospital in Montreal, Cynda Rushton, PhD, RN from Johns Hopkins Medical Center, Edmund Pellegrino, PhD, MD and Carol Taylor, PHD, RN from Georgetown Medical Center, Marcia Lattanzi Licht, LPC, MS, RN from the National Hospice and Palliative Care Organization.
For more information, contact:
Email: [email protected]
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Another IAHPC LANDMARK!
IAHPC'S Clearing House Program is designed to help programs and individuals who are interested in receiving donated medical supplies, journals, publications and helpful items match with donors in developed countries.
The Clearing House Program will exceeded shipping over 10,000+ LBS to more than 800 programs in over 97 countries in 2005!
Featured IAHPC Section:
All New "International Hospice and Palliative Care Directory"
Our new directory has over 1,000 listings. It also has a search feature you may search by name, address, country, zipcode, phone number and many other options. Listings now can add a description up to 1200 characters, along with expanded contact information. Use the HELP box on the right side to guide you through.
View our director here at http://www.hospicecare.com/yp/ and check the listings to see if your program has been included. If it’s not, please use the submission form to add, correct or update your listing information.
Do you have a website? Help us by adding our link to your website
Visit our how to link to us section on our donate page.
Looking for an article or section on our website?
View our updated Site map!
Visit our Book & Video Shop for your hospice & Palliative care needs.
5 new titles with reviews including one cd-rom added this month!
See Reviews in this newsletter.
Coming Events! Please visit our Future Events section to view events and add your event to our website. 3 new listings added this month!
A good Resource
Clinical Calculators - Calculators from A-a Gradient Calculator, Body Mass Index (BMI), Creatinine clearance (Adult), Digoxin Dosing, Drip Rate Table Creator, Fentanyl Patch Converter, Narcotic analgesic converter, Steroid Converter, Temperature Converter Celsius-Fahrenheit to Warfarin Therapy and many more!
You may find more resources & tools on our website at Pain & Palliative Care Assessment and Research Tools
Drop by often & don't miss out Until next month!
Comments/Questions about our website?
Contact us here: http://www.hospicecare.com/contact.htm
William Farr, PhD, MD (USA)
Medicaid in Florida adds new child program
From the US Department of Health and Human Services: “Low-income children in Florida, who have life-threatening conditions, and their families, will soon have access to a new set of benefits to help them with their unique needs, according to an announcement today by HHS Secretary Mike Leavitt. Secretary Leavitt approved an innovative new Medicaid model of care for children that will add special respite care and counseling for families to the package of curative and palliative care critically ill children already receive under the Medicaid program.”…
Children’s Hospice International has more information about this program on their website: http://www.chionline.org/
American Academy of Hospice and Palliative Medicine’s News
“AAHPM is working with the American Board of Hospice and Palliative Medicine (ABHPM) to win recognition for the subspecialty of hospice and palliative medicine within the American Board of Medical Specialties (ABMS) and the Accreditation Council for Graduate Medical Education (ACGME).” To read more about this process go to their web site at:
The IAPHC Clearing House Program
Here we list recent thank you notes by recipients of the Clearing House Program.
Greetings from Khon Kaen, Thailand
Thanks for material donation
Thank you very much. We really appreciated to get the copy of palliative care oxford textbook from IAHPC last week. It can be very useful in our setting about pediatric palliative care in our region.
We hope we will have an opportunity to have some materials donation from you again.
Thank you very much for support. Have a great day.
With warm regards,
Pediatric Nursing Department
Faculty fo Medicine, Khon Kaen University
Khon Kaen, Thailand, 40002
From New Delhi, India
Dear Liliana De Lima
We thank you for the kind and generous support
provided by IAHPC by sending us second addition of
Oxford Textbook of Palliative care. It will be of great use for our staff.
With kind regards
Associate Prof. and Head of Anaesthesiology and
Pain and Palliative care at IRCH, All India Institute of
Medical Sciences, New Delhi, India
From Kerala, India
Dear Ms De Lima,
Thank you very much for the Oxford text book of Palliative Medicine you sent us as part of your Clearing house program.
We were badly in need of such an authentic text. Our’s is a Palliative care unit functioning as a collaboration between a government and a Charitable organization named Pain and Palliative Care Society, Thrissur.
We have a team of doctors, volunteers and nurses, most of whom had received basic training in palliative care. But we have a long way to go in the area of training and research work. Your donation will definitely help us in this endeavour. We would like to have more of such teaching/learning materials. This is also a request for more of books / journals etc.
Love and regards,
Dr. E. Divakaran
Dept of Anesthesiology District Hospital
Trichur, Kerala INDIA
From Grahamstown Hospice South Africa
Thank you so very much to the IAHPC for our copy of the Second Edition of the Oxford Textbook of Palliative Medicine!
What a blessing it is to have an update on the first edition which we have almost worn out with use - we were lucky enough to have more than one copy so were able to loan to other practices in the community on occasion.
We have at present a local specialist physician and a GP who are doing the Masters in PC through Wits university in SA and they, along with our multidisciplinary team, will appreciate this new resource.
Director Grahamstown Hospice South Africa
From Bloemfontein South Africa
Thank you very much for the wonderful gift of a copy of the Oxford Textbook of Palliative Medicine for The St Nicholas Children’s Hospice in Bloemfontein South Africa . We are expanding our training courses in palliative care, especially in paediatric palliative care, and this textbook will be very useful and greatly used.
The St Nicholas Children’s Hospice
Bloemfontein South Africa
William Farr, PhD, MD
Letters to the editor may be submitted at the following page
****Thanks to all contributors to this issue.****
Ways To Help The IAHPC
© 2005 IAHPC Press