Call For Recognition Of Palliative Care And Pain Treatment As Human Rights

On Monday, August 4, a Joint Declaration and Statement of Commitment calling for the recognition of palliative care and pain management as human rights was presented at the XVII International AIDS Conference in Mexico City. The International Association for Hospice and Palliative Care and the Worldwide Palliative Care Alliance were among the signers, including representatives of regional organization from Africa, Latin America, Eastern and Western Europe, Asia, and North America.

The seven goals in the Declaration are:

1- Identify, develop and implement strategies for the recognition of palliative care and pain treatment as fundamental human rights.

2- Work with governments and policy makers to adopt the necessary changes in legislation to ensure appropriate care of patients with life-limiting conditions.

3- Work with policy makers and regulators to identify and eliminate regulatory and legal barriers that interfere with the rational use of controlled medications.

4- Advocate for improvements in access to and availability of opioid analgesics (pain relievers) and other medications required for the effective treatment of pain and other symptoms common in palliative care, including special formulations and appropriate medications for children.

5- Advocate for adequate resources to be made available to support the implementation of palliative care and pain treatment services and providers where needed.

6- Advocate for academic institutions, teaching hospital and universities to adopt the necessary practices and changes needed to ensure that palliative care and pain positions, resources, personnel, infrastructures, review boards and systems are created and sustained.

7- Encourage and enlist other international and national palliative care, pain treatment, related organisations, associations, federations and interested parties to join this global campaign for the recognition of palliative care and pain treatment as human rights.

Pain and Creativity Exhibit - Call for Artwork

The American Pain Foundation and the HealthCentral Network are looking for people for have pain or are affected by pain to share their artwork in a variety of forms, painting, sculpture, video, words or pictures.

Selected artists and their pain stories will be featured in the American Pain Foundation and HealthCentral Web sites, print publications, and in videos to raise awareness of the pain experience and the impact it has on the individual, family and society.

Online submissions must be received by September 15, 2008.

Cancer Patients Not Given Enough Information about the Survival Benefits of Palliative Chemotherapy

A study funded by Cancer Research UK and carried out at the University of Bristol of 37 cancer patients, showed two-thirds received little or no information about the survival benefits of having palliative chemotherapy before making a treatment decision. The study was published on bmj.com and discussed that palliative chemotherapy in patients with advance cancer has modest survival benefits, and tends to be months rather than years.

During the consultations, there was consistency in informing patients that a cure was not being sought for them, but the amount of information about survival benefit varied considerably.

Information given to patients about survival benefit included: numerical data ("about four weeks"); an idea of timescales ("a few months extra"); vague references ("buy you some time"); or no mention at all.

Only six patients out of 37 were given numerical data about the survival benefits of treatment.

For the majority of consultations observed (26 out of 37), discussion of survival benefit with patients was vague or it was not mentioned at all.

The researchers say there are concerns that the "intrusiveness of unfavourable numbers", in terms of months left to live, can undermine healthcare relationships and destroy hope.

They say: "Giving comprehensible and appropriate information about survival benefit is extremely difficult. In addition, the reluctance to inform patients of the limited survival gain of palliative chemotherapy may be motivated by a desire to 'protect' patients from bad news.

"However, the reluctance to address these difficulties and sensitivities may be hampering patients' ability to make informed decisions about their future treatment."

The researchers say oncologists and cancer teams have to communicate sufficient information to enable patients to make informed decisions based on realistic aspirations, but to do so in a sensitive manner and at the patient's pace.

They also recommend that oncologists receive training in how to communicate relevant information on survival benefits to their patients.

National updated information is needed about the prognosis of advanced cancer and the benefits of palliative chemotherapy as well as decision aids to help patients interpret information, say Daniel Munday and Jane Maher in an accompanying editorial.

Use of Antibiotics at the End-of-Life in Dementia Patients

The Chetek Alert (Wisconsin) published a letter about the difficulty navigating decisions to medicate near the end-of-life. HFA’s medical consultant William M. Lamers, Jr., M.D. recently weighed in on a study about antibiotic use in dementia patients. It is one thing for medical professionals to debate the ethics in journal articles, it is another to read a very personal account of the decision-making process a family must go through in regard to giving medications. The letter from John M. Hardin, involving the care of his wife who had dementia, is such an account. We are sharing it here in the interest of opening up the dialogue about the use of medications at the end-of-life.

Although patients with terminal illnesses (or their families) are more routinely asked if they have a DNR (Do Not Resuscitate) order, questions involving other types of medications are not usually part of the process. Hardin argues:

I would like to propose a new approach to nursing home admittances, especially when there are no living wills or power of attorney for health care. In addition to asking if the loved one is DNR, they should also be asked if they are DNM (do not medicate with new drugs) or PCO (Palliative Care Only). Then, and only then, will we return to the normal course of things that existed before 1943. Then and only then will we finally address the issues surrounding dementia with a more realistic, kinder approach.

UPDATE 4/28/08: A director of a nursing home responded to the letter with the following:

I read with interest the article on end-of-life decisions by John Hardin and I am in total agreement that these decisions are very difficult for all involved, but are necessary.

Knapp Haven's admission procedures do include reviewing with the resident or the responsible party measures that they want put in place so everyone respects their decisions and quality of life wishes. This is not a new approach, as it has been our policy for more than 17 years. The options presented include not only do-not-resuscitate measures, but also palliative care measures only, including the choice of medication therapy.

Mary Huset
Director of Nursing
Knapp Haven Nursing Home

Improvement in Care of Children with Cancer

A retrospective study of 119 patients who died from cancer between 1997 and 2004 was compared to 102 cancer patients who died between 1990 and 1997. The goal of the study was to determine whether increased palliative care could affect patients’ quality of life and care. Appearing in the Journal of Clinical Oncology, the study concluded that these children ". . . are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely."

In a press release, lead author Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Dana-Farber and Children's Hospital, discussed the findings.

Wolfe and her colleagues identified notable changes in the patterns of care. Medical record reviews indicated a 40.7 percent increase in documented discussions about home or hospice care in the follow-up study (76 percent of medical records included a note that palliative care options were discussed with the family, up from 54 percent). There also was a 16.4 percent increase in do-not-resuscitate orders (78 percent, up from 67 percent). The proportion of children who died at home remained similar between the two studies, but, in the second study, there was a 42.1 percent decrease in the proportion of the children who died in the intensive care unit (22 percent, down from 38 percent).

Although the follow-up study indicated that children were proportionately as likely to experience fatigue, pain, shortness of breath, or anxiety, they suffered less from the symptoms, with the exception of fatigue.

Wolfe said that one of the most meaningful findings to her was the shift in where children are dying. "Fewer children are dying in the intensive care unit, and that is likely because other options are open to families," explained Wolfe. "This might be because there are more opportunities to have conversations around this intensely sad outcome, but at least it is making a bit of a difference in the context of losing a child to an illness. Dying in the ICU might be the right location for some children and families, but at least they are aware that they have options."

Role of Palliative Care Pharmacists in Patient Care

From the American Society of Health-System Pharmacists, a description of the changing roles of a palliative care pharmacist. While providing psychosocial care is traditionally seen as the role of a social worker on a palliative care team, some programs are training pharmacists to play a greater part.

Barriers to Pediatric Palliative Care Examined

Pallimed reviewed a recent article from the journal Pediatrics on how health care providers perceived barriers to palliative care. The researchers surveyed 689 health staff at UCSF Children's Hospital (117 nurses, 81 physicians, and 42 staff from a variety of other disciplines responded.) The top two barriers identified by staff were, first, uncertain prognosis and second, family not ready to acknowledge incurable condition. Pallimed's Christian Sinclair, MD, points out that, "These two reasons are intimately related and are joined by the skill to adequately communicate medical information, probabilities and uncertainties, and the ability (for staff and patient/family) to hold out for hope but accept the probability of decline."

Another Recall Notice - Fentanyl Patches

Actavis Inc., the United States manufacturing and marketing division of the international generic pharmaceutical company Actavis Group, has announced that 14 lots of fentanyl transdermal system CII patches sold in the United States by Actavis' subsidiary Actavis South Atlantic LLC are being voluntarily recalled from wholesalers and pharmacies as a precaution. They include:

Actavis Fentanyl Transdermal System, 25 mcg/hr.
Actavis Fentanyl Transdermal System, 50 mcg/hr.
Actavis Fentanyl Transdermal System, 75 mcg/hr.
Actavis Fentanyl Transdermal System, 100 mcg/hr.

Anyone with Actavis Fentanyl transdermal system patches with the above listed lot numbers should call 877-422-7452.

For more detailed information, please visit the FDA Recall Notice.

Important Recall Information for Caregivers: Duragesic Patch

The American Pain Foundation announced an important recall on their website we wanted to share.

"On Tuesday, February 12, 2008, PriCara, the manufacturer of transdermal fentanyl (Duragesic®), announced that supply lots of their 25mcg/hr patches were recalled due to a flaw in the cut of one edge. To be aware that some patches may unintentionally expose patients directly to the medication gel (because the integrity of the barrier could be compromised), these lots as well as those manufactured by ALZA and sold by Sandoz have been voluntarily recalled to remove them from the market place. Other strength patches (12.5, 50, 75 and 100 mcg/hr) are not affected."

New Guidelines Issued For End-of-Life Care

The American College of Physicians (ACP) has issued new guidelines to address palliative care for seriously ill patients. The guidelines address three common symptoms experienced by patients who are approaching the end of life: pain, shortness of breath (dyspnea), and depression. An article from MedPage Today also addressed how doctors determine when end-of-life care should begin. "Asking clinicians 'Would it be a surprise if this patient were to die within six months?' is being used widely but also has had no rigorous testing," according to Karl A Lorenz, M.D. and colleagues of the Veterans Affairs Greater Los Angeles Healthcare System. Their review of existing literature and reports resulted in the ACP's new guidelines. The article stated:

"For those with serious illness at the end of life, the guidelines recommended that clinicians should:

• Regularly assess patients for pain, dyspnea, and depression.


• Use therapies proven effective to manage pain, which for cancer patients includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates.


• Use therapies proven effective against dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia.


• Treat depression with proven therapies, which for cancer patients includes tricyclic antidepressants, selective serotonin reuptake inhibitors, and psychosocial intervention.


• Ensure advance care planning, including completion of advance directives, for all patients with serious illness."

Myths About Morphine May Limit Its Use

On Dec. 11, Science Daily reported on a study that appeared in the journal, Annals of Oncology. The study examined the beliefs cancer patients hold about using opioids for pain relief. The study's author conducted 18 in-depth interviews with patients suffering from metastatic cancer in the United Kingdom. The article states that, "Cancer patients are suffering unnecessarily because they wrongly believe that morphine and other opioids are only used as 'comfort for the dying' and as a 'last resort' rather than seeing them as legitimate pain killers that can improve their quality of life." The study abstract may be viewed here.

Hospice Foundation of America has published a collection of common myths about pain management. Read them here.

New Publication Focuses on Issues of Ethics and Pain Managment

The issue of pain management at the end of life is an ongoing concern for professionals and families. While hospice professionals offer special skills in this field, many health care professionals have not received proper training or have a comprehensive understanding of the critical importance of pain management in end-of-life care.

The Center for Practical Bioethics' most recent publication (PDF) looks at Bioethics and Pain Management, and includes articles from Dr. Richard Payne of the Institute on Care at the End of Life at Duke University and Betty Ferrell, City of Hope Medical Center.

Palliative Care for Children

MDLinx reports findings of a qualitative study investigating nurses involved in arranging children's palliative care services.

HFA's 2008 Living With Grief teleconference will focus on children and adolescents. Learn more here.

Published August 30, 2007.

Role of Painkillers in Palliative Care

In an op-ed piece that appeared in the Tennessean, Janet L. Jones, R.N., B.S.N., FAAMA, President & CEO of Alive Hospice (http://www.alivehospice.org/) writes about the role of painkillers in palliative and hospice care.

Learn more about the role of painkillers in pain management at the end of life on HFA's 2006 teleconference resource page.

Printed August 26, 2007.