Hospice for chilldren to be built in Alberta

This is wonderful news to me: Alberta's 1st children's hospice breaks ground.
Hospice care and palliative care are starting to really come into their own right as medical specialties. Yet, as society accepts the elderly and adults dying from fatal or chronic illness, there's still a tendency to deny that this also happens to our children.

When children die, the support network has to be large because the child's death affects the families and friends in so many ways. While doctors, nurses and other healthcare professionals do their best in a hospital environment, it's not the same as receiving care in a place that is dedicated to understanding the reality of a child's death.

No, it's not a pleasant thing to think about, but by denying families access to specialized places, we aren't going to make their children live any longer.


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Saturday, October 6, 2007: World Hospice & Palliative Care Day.

What is World Hospice & Palliative Care Day? According to their website, “World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.

World Hospice and Palliative Care Day will take place on October 6th 2007 with Voices for Hospices, the global musical marathon event which has over 500 concerts around the world and is the official fundraising event for World Hospice and Palliative Care Day 2007."

Among the people who know me, it’s no secret that I have a strong interest in death and dying, and the end-of-life stages. I recall taking a humanities class in college called Death and Dying, although truth be told, I can’t recall anything of what I learned. But it must be that the class sparked my interest because even when I was working in the acute care hospitals, I felt like I could make a difference with my patients who we knew were going to die.

To that end, I’ve started my own site on Palliative Care. I invite people to look at it and use it for the resource that I hope it will be. It’s definitely in its infancy and I’m hoping that it becomes as useful a tool as I think it could be. If it does, I’ll move it to its own domain and see how large it can grow.


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Taste and anorexia

Advanced directives/Living wills

Post 100! When I began writing this blog, I wasn’t sure if it would last a week, let alone for 100 posts. Where’s my cake? {grin}.

Ok, now for the stuff that people come for:

How many of you have advanced directives or a living will? If you don’t have one, have you thought about one?

I’m working on a proposal for a potential client and one part includes information on advanced directives, what’s involved and why people should have them. I don’t have one on paper, although I have discussed this with family and friends. Considering my work as a nurse, after seeing what I have seen, you would think that I would have it more together and have my wishes written out, but I am like millions of other North Americans and just haven’t gotten around to doing it.

What are advanced directives? An advanced directive or living will is an important document that relays your wishes for health or medical care if you are unable to speak for yourself or if you are unable to make such decisions. If you don’t have an advanced directive, family or friends may be forced into the position of choosing for you. Even if you have discussed this issue with them before, it is still a difficult decision for another person to make. By having a living will, you keep others from having to take on the burden.

Advanced directives may sometimes be called DNRs or Do Not Resuscitate orders, but a DNR order is more specific than an advanced directive. DNR means simply that: no CPR (cardiopulmonary resuscitation). A living will addresses more than just CPR. It addresses issues like if you should be placed on a ventilator if you can’t breathe, if you should be tube fed if you can’t eat, if you should be treated for illnesses other than the one causing your incapacity, and so on. An advanced directive tells the healthcare professionals how much you want done. It can even include if you wish to have your organs donated for transplantation.

When having an advanced directive or living will drawn up, check with your state or provincial laws to see what is required. If your document isn’t legally sound, first responders and other healthcare professionals cannot abide by it and must, legally, try to save your life.

Once you have made your advanced directives, make sure that the important people in your life have a copy. The document won’t be of any use if no-one knows about it or doesn’t have access to it. Be sure to review them regularly. Situations change and people change; how you feel when you write the initial document may not be the same as a year later.

And please, if you haven’t considered being an organ donor, think about it. So many lives can be saved by just one person.

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Grief

Grief is a funny thing. We all react differently to the death of a loved family member or pet. Although I had worked in medicine in acute care, we often didn’t have time to think about how people reacted to a death but when I worked in palliative care, it was part of the job.

I’ve long been interested in death and how different cultures think about it and treat it. Back in college, I recall taking a humanities course called Death and Dying, so my interest went back pretty far. But it’s not really something people like to talk about so it’s hard sometimes to be interested in a topic that’s taboo for many.

Our family has experienced several deaths in the past four years or so. My husband’s father passed away after a three-week illness, our golden retriever died of cancer, my brother took his life, our last two guinea pigs left us and then, on Monday, my heart dog – Oscar – died. I know that the death of a guinea pig isn’t on the same level as the death of a brother, but it’s a loss. To me, it’s another soul that has left this earth and it’s a soul that my children loved, so their pain at losing an animal hurts my heart.

The house is a lot quieter these days. I listen for Oscar’s tags, the click-click of his nails on the floor, the thud as he jumps down off my son’s bed. I remember when Rox died (our golden), I often saw him out of the corner of my eye. I haven’t had that with Oscar yet. I often felt comforted by those imaged visions of Rox so I wonder why I’m not experiencing it with Oscar. Maybe it’s too soon. Or maybe it won’t happen.

Oscar was a funny dog – he loved flowers. One time when he got loose, I caught him because he had stopped to smell some flowers. Silly dog. So, now there is a big bouquet of beautiful flowers in the window sill where he’d go and show the neighbourhood how scary and frightening he looked. Silly dog. I miss him.

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Palliative care, as much for the living as the dying

Palliative care and hospice are near to my heart. I believe there should be more emphasis and more work put into making the end of life more comfortable for those who are about to pass on, as well as for those who will stay behind.

Palliative care isn’t about helping people to die; it’s helping people to live. People in a palliative care environment are encouraged to live each day and are given the tools to do so. From the myriad of pain relief methods to special whirlpool baths, the idea is to provide as much comfort as is possible. In most such places, families and friends are encouraged to visit and to help as much as they would like. By providing a home-like environment, the patients are given the opportunity to live their last days in pretty well any way the see fit.

When I worked as a nurse in palliative care, I often saw people who came into our residence much later than we felt they could or should have. Many people feel that they want to die at home, not realizing how difficult this can be on both them and the people in their family who are providing the bulk of the care. Or, the patients may have been in a hospital environment for too long, either not being referred earlier, or not being ready themselves to come to the residence.

Hospice care or palliative care also doesn't necessarily mean admission to a specialized unit; it could be care that is brought into the home by qualified healthcare workers. A recent study by Brown University, in the United States, shows that one in 10 people weren’t getting hospice care early enough. That means, these people weren’t receiving the care that would have made their lives more comfortable and maybe bearable.

Many people believe that hospices and palliative care units or residences are depressing places – most of the time, that’s far from the truth. While the reality of death and dying can’t be denied, there is so much more to life in a palliative care unit. There are families that reconcile, weddings, smiles, and closure. Of course, there are always the patients who don’t or can’t tie off the loose ends, or who leave this world without being able to finish what they started, but for the most part, the palliative care environment allows for the closure that so many families need.

I hope that this study helps make people realize the importance being sure that those who need palliative and hospice care get it in a timely manner. It’s the least we can do.

Today's News:
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