Not Quite a Blog
Welcome to my "Not Quite a Blog" on death and dying, and all things palliative care.
I'll be updating this with news and articles as I find them in my wanderings across the Internet. If you have an interesting bit to add, please email me with the information, including the source and link, and I'll see what I can do about adding it here. The more information we have, the better the site will be.
December 31, 2007
A little while ago, I was contacted by a publicist to ask me if I wanted to review a book called The Best Way to Say Goodbye: A Legal Peaceful Choice at the End of Life, by Stanley A. Terman, PhD, MD.
I hesitated at first as I don't know if I feel comfortable doing this sort of thing, but the book intrigued me, so I agreed and accepted a free copy.
I found the book to be very interesting and very educational. It is US-based so the legal information is American, but reading these sections does give you an idea of what to think about in your own part of the world.
A large part of the book focuses on advance directives and what is important to consider when drawing them up.
So, the end result is I do recommend it and I hope that others will get out of it what I did.
December 27, 2007
New UIC Center To Study End-of-life Transition
This story caught my eye - it's nice to see that the topic is receiving some attention.
December 22, 2007
I have a new blog, called Help My Hurt. Here, we discuss pain and issues surrounding pain. It's still very much in its infancy so there is still a lot of information to be added. I will be having a section on pain in palliative care so I encourage you to visit and make your suggestions as well.
December 21, 2007
With the holidays approaching, many people are unsure of what to do if they have a family member or friend who is dying.
Don't forget the reason behind palliative and hospice care: you are alive every day you are alive - and the palliative care team is there to help you live that life.
The holidays can still be a time for celebration, for the time you still have with your loved one. Take the time and remember the good times, and celebrate the time of now. If it would help, read my article, Give the Gift of Your TIme.
December 5, 2007
One of the problems in providing palliative care to the general public is the issue of access. People can't access what they don't know about. The news of the importance of hospice care and palliative care is vital. The more people who know about it, the more people can ask for it - or demand it.
I addressed this issue in an article, published today, on CBC.ca, it's called
Palliative care, Raising awareness key to improving access
December 3, 2007
There are many resources on the web and not all are reading material. One intereting site is called the Growth House.
At the Growth House, you find Growth House Radio, a site that provides you with audio programs about palliative and hospice care. There are programs on tube feeding. living wills, and ethical issues, to name just a few.
Not everyone learns or absorbs information in the same way. There are also people who have problems with reading text on a computer. For these people, audio programs are a bonus. If you are interested in these topics, give this site a visit. It's quite enlightening.
October 26, 2007
The New York Times published an interesting article on October 22, called When Doctors Steal Hope.
I can see both sides of the issue from both the professional side and the personal side. Is it better to be prepared for the worst and be happy that it didn’t come to be? Or is it better to know the best and worst, and be hit with the emotions that come with having an outcome that you hadn’t hoped for?
Ideally, the healthcare professionals would have time to sit down and explain everything, including helping you prepare for the worst outcome. This doesn’t always happen though, so how do we address this issue? I’m wondering if this is also part of the problem with preparing people for palliative care.
While in some illnesses, we know that there is no other outcome other than death, like ALS (Lou Gehrig’s disease), the diseases like cancer can have other outcomes. So, the issue of palliative care is not usually brought up until it becomes obvious that death is imminent – and even then this may not happen because then, death is considered to be a failure.
October 18, 2007
What do you think about this article, Back Off! I’m not Dead Yet?, by Charlotte Allen, which appeared in the Washington Post?
I think Ms Allen completely missed the point of the reasons behind a living will. Even the most routine procedures can turn out with less than ideal outcomes. And, the living will isn’t just for the person who is ill, but for those who are left behind. There are few things more stressful than trying to make a decision on someone else’s behalf without knowing what it is he or she would have really wanted.
The other argument I have is living wills are not just for that one time we are ill, but for any event. Ms Allen may easily sail through the surgery only to be hit by a car on the way home – these things happen.
The choice is entirely hers, but I believe that she is making her choice based on incorrect logic.
October 15, 2007
When I was working as a nurse on the floors, I frequently came across situations where an older family member was dying, but he or she supposedly didn't know. The family refused to allow the hospital staff to tell the dying person and that it was better this way.
I always had a real problem with that, even way back before I developed my interest in death and dying. I remember thinking that it was mean and unfair to deny someone the right to say good-bye, to talk to their friends and family, and perhaps to finish some unfinished business.
I also believed then, as I do now, that these people did know that they were dying, but either had to pretend that they didn't know, or they weren't allowed to talk about it.
How sad, to be at the end of your life and being treated as if you can't make decisions for yourself; that you can't be trusted to know the truth of what is in store.
The argument we heard the most often was that the person wouldn't be able to handle the news. My argument was almost always the same, "you would be surprised what people can handle."
I still feel very strongly about this issue. An article published in the Lansing State Journal on October 14th, called Experts: Be honest, open about death, mentions this: "People are happier when given a chance to reconcile with the idea that they're dying and to say goodbye to family and friends, said Dale Larson, an end-of-life expert and dean of psychology and counseling at Santa Clara University in California." While it may be difficult at first, the truth is never something you end up needing to dance around and you don't have to worry about someone speaking out of turn.
October 12, 2007
Just when we think we're gaining ground in hospice and palliative care, we may lose some. According to an article, Fears for Scottish hospice that appeared today in The Herald, the National Health Service proposed that the St. Margaret of Scotland Hospice, the largest in Scotland, replace 30 beds, now used for the frail elderly, for other uses.
October 10, 2007
As the medical community and other interested people try to bring effective end-of-life care to Africa, we still learn that they can't even get proper analgesia (pain relief) for their many patients. In an article published yesterday in the International Herald Tribune, writer Donald G McNeil, Jr., reports on a survey of specialists in Africal, Asia, and Latin America. He writes, "In Africa, the report said, 20 percent of all palliative care specialists had no access to morphine or other strong opioids, and 25 percent never had weak opioids like codeine."
You can read the article for more information.
Sadly, I'm not surprised. There still remains a huge gap between quality care between the haves and the have-nots.
October 8, 2007
Palliative care is for any terminal illness, but often focuses on cancer. This is likely because the disease is the one with which most of us are familiar. The important thing to take away from the discussion about palliative care is that it almost always is also applicable to other terminal illnesses. While certain symptoms or physical issues may be different, there are more similarities than differences when it comes to end-of-life care.
This past week, the World Health Organization (WHO) has published a new guide on palliative care for those who are dying of cancer in the developing nations. You can find a copy of this guide at the WHO website.
On page 2, you will find the Key Messages:
“Palliative care is an urgent humanitarian need worldwide for people with cancer and other chronic fatal diseases. Palliative care is particularly needed in places where a high proportion of patients present in advanced stages and there is little chance of cure.
Ideally, palliative care services should be provided from the time of diagnosis of life-threatening illness, adapting to the increasing needs of cancer patients and their families as the disease progresses into the terminal phase. They should also provide support to families in their bereavement.
Effective palliative care services are integrated into the existing health system at all levels of care, especially community and home-based care. They involve the public and the private sector and are adapted to the specific cultural, social and economic setting.
In order to respond to the cancer priority needs in a community and make the best use of scarce resources, palliative care services should be strategically linked to cancer prevention, early detection and treatment services for both adults and children.”
The guide is very interesting reading and I encourage anyone who is interested in the institution of palliative care in the developing world to read it. The authors review the social context of palliative care plan, gaps in services, assessment of the feasibility of services, priorities, planning, and organization.
October 6th:
World Hospice & Palliative Care Day
World Hospice and Palliative Care Day 2007
Key International Messages
2007 Theme
"The theme for World Hospice and Palliative Care Day 2007 is care across the ages – from children to older people highlighting the fact that people of all ages need access to hospice and palliative care and that people of different ages have different needs.
World Day this year is linked to Voices for Hospices which facilitates thousands of concerts around the globe. One aspect of the theme is therefore about giving people affected by life-limiting illness of all ages a voice to help them overcome the isolation that illness can cause, and to be seen as people rather than patients."
To read more of the Key Internal Messages, from which these two paragraphs are from, you can go to the Key Messages published at worldday.org.
October 3, 2007
Palliative and hospice care involve caring for people at the end of their lives. However, the type of care and the reasons for the end-of-life stage varies tremendously depending on the part of the world we’re in.
When we speak of palliative care in North America, Europe, Australia, and New Zealand, we generally think about care for people who are dying of diseases like cancer most of the time, followed by heart disease, AIDS, or neurological diseases like multiple sclerosis. In Africa, AIDS is the primary disease that requires palliative care. And, because of the disease itself and the risk of infection to caregivers, the type of care that people get at end-of-life can be quite different due to resources and local beliefs.
According to the World Health Organization (WHO), in Uganda, while there are about 20,000 people with cancer who need palliative care, there are 200,000 with AIDS who need palliative care. Research done by the WHO has found that of people who need end-of-life care, the breakdown is:
HIV/AIDS: 73%
Cancer: 22%
HIV/AIDS and cancer: 3%
Other diseases: 2%
This breakdown shocked me. I knew the need for palliative care for AIDS was high, but it never occurred to me just how high.
Here’s more information on the need palliative care in Uganda for people who are dying of AIDS-related illnesses
References:
WHO Palliative Care
WHO Community Health
October 1, 2007
Recently, a conference on Death and Dying took place in at the University of Bath in the United Kingdom. One speaker, Dr Elaine Kasket from London Metropolitan University, reported on a small study of 8 physicians regarding their experiences with death.
She found that some of the physicians had difficulty telling her about some of the more traumatic deaths that they had witnessed over the years and that they hadn’t ever really gotten over them, even if they occurred as long as 30 years earlier. In our society, we tend to think of medical professionals as super human when it comes to death.
Doctors and nurses witness death all the time through their work. However, doctors don’t seem to be as well prepared for the effect that death may have on them. Add to this that death is often considered by doctors to be a failure – that they failed to save a patient.
As palliative care becomes more mainstream and doctors are learning more about the process of death, not as a failure but as a part of life, we can hope that this attitude of doctors not being able to show emotion or feelings towards death may change.
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