An article in Time magazine told of a small study led by doctors at the Dana-Farber Cancer Institute in Boston of parents of children who had died of cancer.  Of 141 parents interviewed, 19 said they had thought about asking a doctor to hasten their child's death.  Thirteen of the parents reported that had actually discussed hastening their child's death with caregivers.  An additional 34% of parents said that in retrospect, they would have considered hastening their child's death if the child had been in uncontrollable pain.

This was a small study but I think it speaks volumes about a parents need to see their child comfortable.  It's unthinkable to loose a child to cancer and many parents don't want to "give up" on a cure but when it's inevitable that the child will die, parents want nothing more than to spend as much quality time with their child as possible, as long as the child is not suffering.  This is why palliative care for children is so essential, and why California has passed an initiative that guarantees children access to palliative care while receiving concurrent curative treatments.  The Senate version of the Medicare reform bill includes such a provision as well.  If every child has access to palliative care as standard form of cancer treatment without having to give up any other care, parents would be less likely to see their son or daughter suffer in uncontrollable pain.

The article in Time made one error that I would like to point out.  The author writes that in a difference between treatment of uncontrolled pain for adults versus children, more adults are likely to receive palliative sedation than children.  This makes absolute sense, since parents want to spend as much time with their child awake as possible.  The error made was reporting that palliative sedation was morphine-induced.  Palliative sedation is not induced by morphine, although morphine may be used to treat pain.  Sedation is induced by sedatives, such as barbituates.  Learn more about Palliative Sedation.

Learn more about Palliative Care for Children

The Nick Snow Act in California

Pain Management

A report in the Annals of Internal Medicine looked at the incidence of patients admitted to hospice care with implantable cardioverter-defibrillators, how many of them received shocks, and how hospices were managing the devices.  Implantable cardioverter-defibrillators (ICD's) are devices implanted under the skin near the heart that monitors the heart's activity and automatically delivers a shock if necessary.  Patients who are admitted to hospice care with these devices still activated may receive shocks at the end of their life.

The study found that 97% of hospices responding to the survey had admitted patients with ICD's.  Only 10% of the hospices had policies on managing the ICD's and over 50% of patients with the devices had been shocked.  Less than half of patients admitted to hospice with ICD's  had the shocking mechanism deactivated.

I would be interested to know how many patients with the devices want them deactivated and how many actually want to keep the defibrillator functioning.  If a patient is in the dying process and his heart goes into an abnormal rhythm (which would be pretty common, especially in patients with heart disease) an ICD that has not been deactivated would deliver shocks to his heart.  This could potentially prolong the dying process and cause the patient discomfort.  Are hospices doing enough to educate patients with ICD's about how they might impact the dying experience?  Are hospices even addressing this issue at all?  With only 10% reporting having policies on ICD management, it makes me wonder.

Does your hospice have a policy for managing ICD's?

Do you or your loved one on hospice have an ICD and if so, how is it being managed?

This month's Palliative Care Grand Rounds (PCGR) - a blog carnival of the best palliative care, hospice, death, and bereavement blogs - is up at Larry Beresford's Growth House blog.  Larry has done a wonderful job of compiling the best blogs for your reading pleasure.  Take a look at this month's installment at Growth House and check out the main PCGR site for past installments.

Have you heard stories of dying patients seeing long dead loved ones?  Or maybe you've heard stories of patients who predict when they will die and then fulfill the prophecy.  I've experienced both of these scenarios as well as other fascinating phenomena.  I've had a patient ask me to dress him in his tuxedo so he can grab his already packed bags and "go" just hours before he died.  I've known several patients who should have already died but who hold on until something important is accomplished, such as the arrival of a loved one to say goodbye.  These are wonderfully fascinating experiences - as long as you know what is happening.

Experiences like these are examples of a phenomena known as "Nearing Death Awareness".  This concept was made popular by Maggie Callanan and Patricia Kelley, both hospice nurses who have collected stories of patients who seem to have a special awareness that death is near, and even the ability to somehow control when it will happen.  They turned this collection of stories into a wonderful book, Final Gifts.

Often times, the phenomena of Nearing Death Awareness is overlooked or even mistaken for confusion, delirium, anxiety, or restlessness.  Families and healthcare professionals may medicate the patient in an attempt to "calm them down" or frustrate themselves and the patient by trying to re-orient them to reality.  When this happens, they are missing special opportunities to understand what the dying person is trying to tell them.

Are you interested in how you can recognize if your loved one is experiencing Nearing Death Awareness?  Read more about this phenomena and find real life examples of patients who have experienced it.

Nearing Death Awareness:  A Dying Person's Awareness that Death is Near