Withholding and withdrawing artificial nutrition and hydration

Canadian Paediatric Society.

Paediatr Child Health Vol 16 No 4 April 2011

Although the practice of withholding and withdrawing artificial nutrition and hydration (ANH) has become more common, it remains controversial, particularly in the paediatric setting. Decisions regarding ANH, along with other medical interventions, should be considered in the individual context of the child’s overall plan of care. The purpose of the present practice point is to provide guidance for Canadian paediatric health care practitioners regarding when withholding or withdrawing ANH may be an ethically permissible option as part of a palliative care plan and to briefly address some pragmatic considerations. Although the practice of withholding and withdrawing artificial nutritionand hydration (ANH) has become more common, it remains controversial,particularly in the paediatric setting. Decisions regardingANH, along with other medical interventions, should be considered inthe individual context of the child’s overall plan of care. The purpose ofthe present practice point is to provide guidance for Canadian paediatrichealth care practitioners regarding when withholding or withdrawingANH may be an ethically permissible option as part of a palliative careplan and to briefly address some pragmatic considerations. <view full article-pdf>

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OPINION: Notes From a Dragon Mom

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design. 

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure. Read Article

Dr Bob's Place

Dear Physician or Practitioner,

Children bring so much joy to our work as pediatric care providers. We cherish the rewarding work of seeing a positive outcome for patients and families. There is nothing more rewarding than seeing a very ill child return home both happy and healthy. The hard work that can help to achieve this outcome can never be forgotten.

That is why, when we come to realize with some of our patients, that this ‘happy ending’ cannot be achieved as we and everyone had wanted, it can be extremely difficult to know how we can continue to make a difference for these patients and families. I am writing to you to tell you that there is a way that you can continue to make a difference in the outcomes for this group of patients and families.

After delivering bad news, perhaps a poor prognosis or a recurrence of disease for a patient or the first report of a much dreaded diagnosis now confirmed, have you ever wished that there was something else you could do -- something that could make a difference? Even when all of modern medicine has not given what everyone has been hoping for -- hope is still alive. Hope can never be gone for a child; no matter how grim the prognosis. Hope should rest on quality of life.

The word hospice can be a frightening word, not only for the parents and children but also for us. We, as pediatric care providers, have been conditioned to want, and rightfully so, only the best for our patients. Somehow it feels as though hospice is a cop out, a cheat, perhaps even giving up on our patients. I am writing to you to tell you that the hope that should never be discouraged in pediatric care is, in fact, the embodiment of excellent, skilled pediatric palliative and hospice care.

Excellent pediatric palliative care encompasses all that we want for our patients.  It means good quality of life and pain free happy days with their family. Excellent pediatric palliative and hospice care means placing the focus on the child and not the disease, diagnosis or circumstance which has placed them in a circumstance of being given a poor prognosis.

Dr. Bob’s gives children the chance to feel the wind on their face for the first time after months in the  hospital; to play ball, to paint and to laugh out loud --  because their symptoms have been controlled enough to do these things (for the first time in a very long time). Choosing Dr. Bob’s is a decision based on what makes sense, what feels good to the patient and family and what is right for the child. Pediatric palliative and hospice care has everything to do with living – knowing that there is never, ever nothing more we can do. This is what excellent pediatric palliative care means. Please consider a palliative care consult by our team. When you think things are hopeless, it’s time to keep hope alive.

Sincerely,

The Care Team of Dr. Bob’s Place- a Pediatric Palliative Care and Hospice Facility

Dr. Bob’s Place is a project of the Joseph Richey Hospice

838 North Eutaw Street   Baltimore, MD 21201 (410) 523-1414

http://drbobsplace.org/home/