Massachusetts Moves to Require End-of-Life Talks

Mass. Moves to Require End-of-Life Talks:
WBUR radio and Kaiser Health News report that the Massachusetts Senate has quietly approved a measure requiring doctors and nurses to discuss end of life options with patients who have a terminal illness. The Palliative Care Awareness bill was included as part of a sweeping health reform measure and, remarkably, was not controversial. It was supported by both Republicans and Democrats and by a wide range of advocacy groups, including leading right-to-life organizations.

paywalled: Psychological Distress of the Bereaved Seeking Medical Counseling at a Cancer Center

 Blogger's Note/Opinion: the abstract is one of a few which is written in plain english and with an empathetic 'tone' both of which set it apart from many psycho-oncology papers

Psychological Distress of the Bereaved Seeking Medical Counseling at a Cancer Center

Abstract

Objective The death of a loved one is one of the most stressful events in life and is related to the physical and psychological wellbeing of the bereaved. Some bereaved individuals seek medical counseling to alleviate their distress. However, no studies have focused on the bereaved who have lost a loved one to cancer and have asked for medical help at a cancer center as a result. The aim of this study was to investigate the distress of the bereaved who sought consultation, as basic information for considering support.

Methods We conducted a survey of people consulting outpatient services for bereaved families between April 2007 and September 2009. Data were obtained from medical records at initial consultation and qualitatively analyzed by content analysis using all statements related to their distress.

Results Their statements were classified into 11 categories, which were further classified into six themes. The main categories of bereavement-related distress were as follows: (i) regret; (ii) anger; (iii) memories; (iv) loneliness; (v) anxiety; and (vi) hopelessness. ‘Regret’ was frequently recognized in their distress and it includes some points related to the cancer trajectory. 

Conclusions Psychological distresses of the bereaved who have lost a loved one and have asked for medical counseling are revealed. Their distresses are strongly related to the cancer trajectory of a family member. Some of these distresses are related to medical misunderstanding about the course of cancer. These findings might provide basic information for considering their appropriate treatment.

abstract: End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition

End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition

Abstract: 

The aim of the present study is to describe end-of-life preferences of advanced cancer patients willing to talk about death issues. Eighty-eight advanced cancer patients were interviewed through End of Life Preferences Interview (ELPI), a 23-item interview covering a wide range of end-of-life care issues.

book review: The Caregiver's Bookshelf: Dying by Degrees - NYTimes.com

The Caregiver's Bookshelf: Dying by Degrees - NYTimes.com
  
The Caregiver’s Bookshelf: Dying by Degrees

By PAULA SPAN

 

Ira Byock has been writing books about the way Americans die since 1998, when he published “Dying Well.” For most of that time, he has been appalled.

He still is. Dr. Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., pulls no punches in his new book, “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.” The American way of dying, he points out, involves too much suffering for both patients and families, and routinized medical response with not enough individualized care. It means not enough listening, not enough support for families, way too much expense. “A national disgrace,” the author calls it in his introduction..........

open access: Medscape - How Would Physicians Die?

How Would Physicians Die?


"How do doctors prefer to die? This question was addressed in a recent article on the Website zocalopublicsquare.org. The article suggests that physicians eschew extraordinary measures to extend life; instead they put a priority on reducing the pain and maximizing the quality of any limited time remaining. In a discussion on Medscape Physician Connect, an all-physician discussion group, doctors evaluated the accuracy of this portrait.
Overwhelmingly, the respondents agreed with sentiments expressed in the article. They sought to avoid the agony of a lingering final illness for themselves and for those they love. The results of an accompanying poll were unanimous. When completing the thought, "If I or my family were faced with a terminal illness with great potential for a terrible course and reasonable options have failed," all 27 respondents chose, "I'd want the focus to be on quality of life and comfort, no CPR." Not one expressed a preference for life-extending measures. Several physicians shared wrenching stories from personal experience...........cont'd

Weighing the Chances at Life's End - NYTimes.com

Weighing the Chances at Life's End - NYTimes.com


"........But the grimmer the prognosis, the more inaccurate and more optimistic the surrogates’ responses became. Only 22 percent correctly interpreted a statement about what a “5 percent chance of surviving” meant, while 65 percent answered with greater optimism.
“They clearly grasped the meaning of these statements,” Dr. White said. “They were not misunderstanding the numbers. They weren’t misunderstanding the language.” If that had been the case, you’d expect them to have been inaccurate about good news, too.
Instead, relatives hearing doctors deliver dire prognoses just didn’t accept or believe them. They displayed, in medspeak, “a systematic optimism bias.”
Such bias has shown up many times before in the medical literature. Cancer patients enrolled in early phases of clinical trials, for instance,....."

abstract: Palliative Chemotherapy for Malignant Ascites Secondary to Ovarian Cancer

Am J Hosp Palliat Care. 2012

Palliative Chemotherapy for Malignant Ascites Secondary to Ovarian Cancer.

Source

College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL, USA.

Abstract

Although research has shown that palliative chemotherapy is beneficial compared to lack of treatment (Schorge JO, Schaffer JI, Halvorson LM, et al. ed. Williams Gynecology. New York, NY: McGraw Hill Medical; 2008.), other studies show aggressive end-of-life treatment adversely affects quality of life and shortens life span (Arriba L, Fader A, Frasure H, von Gruenigen V. A review of issues surrounding quality of life among women with ovarian cancer. Gynecol Oncol. 2010;119(2):390-396.).

Without a consensus on palliative chemotherapy, underutilization during end of life prevails, and likely will continue without additional research (Barbera L, Elit L, Krzyzanowska M, et al. End of life care for women with gynecologic cancers. Gynecol Oncol. 2010;118(2):196-201.).

This article aims to evaluate and examine existing chemotherapy for palliation of malignant ascites secondary to ovarian cancer and compare commonly used regimens. Agents will be evaluated by their modes of administration. Oral agents include cyclophosphamide and thalidomide, and intraperitoneal vehicles include taxane-based agents, platinum-based agents, antibiotics, and biologic agents. In addition, cost, ethics, and quality of life discussions factor into this review.

Palliative care's goal is to find a balance between life expectancy and symptom relief with minimal adverse effects.

Loved Ones Obtain Various Information About the Progression of the Patient’s Cancer Disease Which is Important for Their Understanding and Preparation

Blogger's Note: no access; see below

Patient Access

• Access for Patients - Patients desiring access should contact the journal.

Association Between a Name Change from Palliative to Supportive Care and the Timing of Patient Referrals -- The Oncologist

"....Because of the nature of our institution as a comprehensive cancer center
with a large patient volume, the results might not be generalizable to smaller cancer centers and oncology programs in other areas. However, the findings 
of our study regarding a higher overall number of referrals and earlier
referrals in the outpatient setting confirm the findings of our previous
survey study on the attitudes and beliefs of medical oncologists and
midlevel providers regarding the term palliative care. We believe
that these findings and the difference in referral pattern after the
name change are not center specific but rather reflect perceptions
among health care professionals in the U.S. regarding the strong
associations among palliative care, hospice, and end of life."


Conclusion The name change to supportive care was associated with more inpatient referrals and earlier referrals in the outpatient setting. The outpatient setting facilitates earlier access to supportive/palliative care and should be established in more centers.

Comments | Decisions at the end of life: have we come of age? full free access - open for commentary

Decisions at the end of life: have we come of age?

Linda Emanuel and Karen Glasser Scandrett

BMC Medicine 2010, 8:57doi:10.1186/1741-7015-8-57

Blog addressing educational, research and genetics needs in ovarian cancer/related populations

(Commentary) Sandi Pniauskas (19 October 2010) Ovarian Cancer and Us
Congratulations to the authors for addressing the issue of changing values and needs of patients at the close of life. Most North American studies on this topic err in their original suppositions regarding the preferred place of death. Generally the focus has been institutional and cost based as opposed to the values and ethics of yes, human dignity in dying. Specific to the needs of oncology patients/families, it is often disturbing to view reports asking citizens where they wish to die when we should know and understand that this answer cannot be of any value until those patients and families are 'in the moment'. The moment-to-moment changes in physical and emotional changes in cancer patients/families and all of the psycho-physio changes require that our systems adapt. Numerous real life examples of institutional/provider interference in the wishes of the dying are disturbingly unconscionable. The question which needs to be addressed is: 'Who's on 'first'?" Having witnessed circumstances where best practices were not followed in favour of cost analyses, we have to ask ourselves who will say no to money before suffering?
Competing interests
ovarian cancer survivor, Lynch Syndrome

Mayo Clinic - Mayo Clinic Review of Ethical Decision Making With End-of-Life Care

End of life 'quality' index | Open Medicine Blog The Quality of Death: Ranking end-of-life care across the world 2010 The Economist Intelligence Unit

"....Advancements in healthcare have been responsible for the most significant quality-of-life gains in the recent past: that humans are (on average) living longer, and more healthily than ever, is well established. But “quality of death” is another matter. Death, although inevitable, is distressing to contemplate and in many cultures is taboo......Few nations, including rich ones with cutting-edge healthcare systems, incorporate palliative care strategies into their overall healthcare policy—despite the fact that in many of these countries, increasing longevity and ageing populations mean demand for end-of-life care is likely to rise sharply. Globally, training for palliative care is rarely included in healthcare education curricula. Institutions that specialise in giving palliative and end-of-life care are often not part of national healthcare systems, and many rely on volunteer or charitable status...."cont'd

The Care Strategy for Families of Terminally Ill Cancer Patients Who Become Unable to Take Nourishment Orally: Recommendations from a Nationwide Survey of Bereaved Family Members' Experiences

Practical Ethics: Religion makes a difference to end-of-life decisions

The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research — Palliat Med

Abstract

Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic (‘meta-study’) review.

Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer. Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a broader term that may or may not encompass religion. A ‘spirit to spirit’ framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, connecting, creating openings, and engaging in reciprocal sharing. Affirmative relationships supported patients, enabling them to respond to their spiritual needs. The engagement of family caregivers in spiritual care appears underutilized. Relationships formed an integral part of spirituality as they were a spiritual need, caused spiritual distress when broken and were the way spiritual care was given. Barriers to spiritual care include lack of time, personal, cultural or institutional factors, and professional educational needs. By addressing these, we may make an important contribution to the improvement of patient care towards the end of life.

End of life 'quality' index | Open Medicine Blog

ASCO: Continuity of care for cancer patients at the end of life (EoL). -- Bascioni et al. 28 (15): 6145 -- ASCO Meeting Abstracts

Conclusion: Continuity of care at the EoL is a priority issue for the families of cancer pts. The daily routine of palliative care and hospice facilities should involve the oncologist to improve the experience of care. Patients' families expect a commitment by the oncologist in bereavement activities.

NCI Cancer Bulletin: Training Providers and Patients to Talk about End-of-Life Care

Why do patients with cancer visit the emergency department near the end of life? - CMAJ

Note: full access (pdf)
"Between 2002 and 2005 in Ontario, 91 561 patients died of cancer and were included in our cohort."

"...The other highly ranked diagnoses that were common to both periods were abdominal pain, dyspnea, pneumonia, malaise and fatigue, and pleural effusion. A notable difference between the two time periods was the rank of cardiac arrest, which ranked 16th among diagnoses made for visits during the final two weeks but 61st among those made for visits during the final six months. Palliative care, dehydration and altered level of consciousness ranked much higher for the final two-week period than for the six-month period. No specific code exists for pain-related crisis...".

"Clinical descriptions of patients or families as no longer “coping” at home are common."