Designing & producing children to save their siblings... heroic or awful... or both?

"The country’s first "saviour sibling", a healthy boy whose discarded umbilical cord will help heal one of his two siblings from a genetic blood disease, has brought complicated ethical issues over biotechnology to the forefront in France." - France 24

http://www.france24.com/en/20110208-france-first-saviour-baby-donor-biotechnology-stem-cell-research-clamart-umut-fryman

Five Wishes

I've been hearing about the Five Wishes with increasing regularity, either in my own research of end-of-life issues or conversations at my church. And when I visited the Aging With Dignity website to learn more, I came upon this recent letter from the non-profit's president, Bill Malley. I found it insightful, and so post it here.

January 5, 2011

“Aging with Dignity is disappointed the Centers for Medicare & Medicaid Services chose to withdraw its new guideline that added voluntary advance care planning to the roster of topics to be covered during annual Medicare-paid physician visits. However, we are greatly encouraged in knowing that many forward-thinking physicians will continue to raise this important issue with their patients, whether or not they are directed to do so. Advance care planning, end-of-life care, palliative medicine and hospice care are worthy subjects of discussion in and of themselves and ought not automatically be dismissed as components of ‘death panels.’

“As the largest provider of advance directives in the nation, Aging with Dignity believes that good advance care planning is always patient-centered and begun between and among family members. The best advance directives are those that are easy to understand and use and allow patients to decide for themselves what is wanted or not wanted. Physicians and other health care providers should assist, not direct, this process.

“Americans do not require government permission or guidance to begin important family conversations about end-of-life care preferences. Indeed, the best hope for overall improvement lies in more people themselves taking the initiative to complete an advance directive. Federal and state officials can do their part by removing the remaining statutory and regulatory barriers to effective and patient-centered advance care planning.”

Link:

www.deathwithdignity.org

WHEN PROMISE OUTGROWS A CLINICAL STUDY

Positive results from fetal surgery for spina bifida were such that a study at UC San Francisco was discontinued so more could benefit. But long before faith in the surgery got to that point, the practice was limited to allow for the study. This is only one of the study’s bioethical complexities debated in Pam Belluck’s piece in the New York Times (“Risk and Reward in Utero, Feb. 12, 2001, Week in Review).

http://www.nytimes.com/2011/02/13/weekinreview/13belluck.html?_r=1&hpw

Encouraging the end-of-life dialogue

For nearly two weeks, an 1,800-pound pallet of cork flooring has been been sitting in a warehouse in Easton, Massachusetts, waiting to be loaded onto a truck and delivered 25 miles to my home. Successive snow storms and their aftermath have complicated this, but the shipping company won’t come out and say how backed up things are, so they apologize and promise that delivery will be made the next morning, but it never is. They seem to be telling me what they think I want to hear, and making promises they can’t keep.

It’s only cork flooring we’re talking about. Why is it so hard to tell me the truth?

Yesterday, while waiting again for my cork to come, I read in the Boston Globe an Associated Press story about the American Society of Clinical Oncology and its efforts to encourage the doctor-patient discussion of care at the end of life -- when the truth is understandably hard to tell and to hear.

Reporting related to the end-of-life conversation tends to become overheated, and even this AP story made passing reference to the “death panels” furor of 2009. It’s refreshing and even hopeful to see a high-minded and professional approach such as ASCO’s getting significant media play. The brochure is downloadable as a PDF at http://www.cancer.net/patient/Coping/Advanced+Cancer+Care+Planning.

In practice, these end-of-life conversations are routinely avoided or delayed. Disbelief and anxiety often accompany a terminal diagnosis, making the subject difficult to broach, even for doctors with the requisite communication skills. And yet palliative care has been shown to improve quality of life, and in combination with chemo even to extend life among advanced cancer patients. The imperative to begin this conversation early is clear. With so many expressing a wish not to die in a hospital, this conversation can reduce urgent transfers from residential care to hospital ICU.

According to the oncology society, fewer than half of advanced cancer patients have an honest, straightforward conversation with their doctors about care choices and expectations. As a result, more patients receive aggressive chemotherapy at the end of life, with little or no therapeutic benefit, and spend more of their last months hospitalized. For many of them, to accept palliative care is to abandon hope.

ASCO’s brochure is titled “Advanced Cancer Care Planning: What patients and families need to know about their choices when facing serious illness.” It begins with promising clarity: “Advanced cancer is cancer that cannot be cured. It may be referred to as end-stage or terminal cancer. However, incurable does not mean untreatable. People with advanced cancer continue to have options for treatment and can maintain a good quality of life.”

Treatment options -- standard therapies, clinical trials, palliative/supportive care and hospice/home care -- are spelled out simply and clearly. Families receive guidance in dispute resolution: “Does the patient understand the risks of treatment and the potential consequences of his or her choices?” “Are the patient’s wishes openly stated and being respected?” “Is this treatment in harmony with the patient’s beliefs and values?”

Even when these conversations begin early, achieving real understanding between doctor and patient is difficult, and requires clarity of language. The brochure is helpful with this. Indeed, it clarified my own understanding of palliative and hospice care: “Palliative care is given at every step of the treatment process and at all stages. Hospice care is a form of palliative care given to people with cancer who are expected to live six months or less, regardless of their age or type of cancer. When the time is right, palliative care specialists will help you make the transition to hospice care and help you address the physical and emotional issues that come with that choice.”

The brochure was preceded in late January by an ASCO policy statement underscoring the importance of the end-of-life conversation, and it will be followed later this year by guidance on how doctors might start this kind of conversation, and when. The conversations can be “the hardest thing a doctor ever does,” society president George Sledge Jr. told the Wall Street Journal Health Blog. “Not all physicians are equally good at discussing (end of life).”

Though the harsh revelation of impending death in unavoidable, the end-of-life conversation can save patients and families pain and anguish. To accomplish this worthy goal, the oncology society says, quality of life must be a priority at all stages of advanced cancer care; doctors and patients should discuss prognosis and treatment options soon after the initial diagnosis of advanced cancer; and patients should understand the possibilities of clinical trials.

This makes such good sense, it seems obvious. Delaying the conversation puts the patient’s wishes at risk.

"This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning," society chief executive Dr. Allen Lichter told the AP. "When everyone is well and has their wits about them, it's time to start the process."