The fact that folks are discussing the end of life care we want vs. the care doctors choose for themselves would point to a pretty big difference between the two. I’m gonna go out on a limb here and say…that’s a problem. Listen to a physician’s discussion of the topic. Educate yourself. Take action or someone else’s actions will take you.
February 2nd, 2013
November 8th, 2012
If you find yourself here, it is likely that you are struggling with some of the many dilemmas that arise as the end of a long life draws nearer. I too have struggled with those dilemmas as they present themselves for attention in a hospital, nursing facility or nursing home, when I was a nurse who worked in these institutions. What I know now is that these institutions try hard to do the right things, but it is just not possible for them to provide the sort of peaceful, dignified, and comfortable death that most of us want. If you feel it is time for you to leave this life it is probably a bad idea to go to a hospital or even to call an ambulance. Seek the help of a hospice near you. They are the experts in dying peacefully and comfortably.
If you find yourself here, then it may be you have some specific question about the care of a loved one. There is much written in the posts here. Unfortunately, they were written as a blog; as they occurred to me on any particular day. If you send an e-mail I may be able to find the answer for you. It is also possible to schedule a phone or skype consultation.
This material needs and deserves a book; Allowing Natural Death: A Handbook for Frail Elders and Those Who Love Them. That will be its title. It is just waiting for me to set myself in that direction. One day. Soon. After I have time to reframe the suffering I saw while working more than 25 years with frail elders at the end of life.
Until that time – Thank you for visiting this site. Contact me for further assistance. And most importantly have….
Courage My Love
July 18th, 2012
Courage My Love
Courage my Love
June 6th, 2012
Thanks, Jane Brody. A recent article from you has again revealed some truths about Americans’ complicated relationship with health care. The article, can be found here: http://well.blogs.nytimes.com/2012/05/28/when-costly-medical-care-just-adds-to-the-pain/?ref=janeebrody . Interestingly in my own local paper the title is “Bloated care system needs a trim”, while in the NY Times, where it originally appeared, it is titled “When costly medical care just adds to the pain.” Doesn’t much matter how we frame it, once again, Ms. Brody is helping to turn the tide of health care consumption that says the more the better. And she does not shy from the clear association between overuse of tests, treatments, procedures, medications (that hurt patients physically) and the still rising cost of care (that hurts the very fragile economics of the country). And even more courageous is her contention that if we cannot decrease the overuse of health care we will see more and more effects of rationing care. Thank you, Jane.
But who is reading this stuff? There is a growing mass of books and articles that illuminate the details cited in Brody’s article (I have written about many of them here), but who is paying attention? If the focus of the overcare argument is on research that looks only at care at the end of life, then the argument for allowing natural death becomes ever stronger. More and more research supports the advantages of a less invasive, less intrusive, high tech death rather than one that brings comfort, dignity and peace. And this is the death that the majority of us say that we want. It is hard to miss the link between overcare and crippling deficits for the US economy generated by increasing costs for Medicare. Recent surveys show Americans’ dissatisfaction with long wait times for nursing staff to come to the aid of patients. Is it possible to make the leap that overcare is keeping hospital staff too busy utilizing the newer better treatments, technology, medications and procedures, thus making them unavailable to their other patients? Coming from over twenty years in environments where elders are receiving care (overcare?), the complexities that grow from the pursuit of the next newest medical intervention, has made the care of the psycho-social needs of frail elders and their loved ones a very very low priority indeed. Is anyone changing their behavior in light of all this talk of dignity, peace and even love for frail elders at the end of life?
I still hear too many stories of doctors who suggest surgeries and invasive procedures for frail elders who complain of symptoms that can best be described as – advanced aging. These symptoms cannot be improved or even made to stop progressing to further disability. But these interventions can easily upset the precarious balance of life that is a natural part of advanced aging and tip it into more complications and a preventable death. Research is telling us over and over that it is the overcare that is causing prolonged suffering and premature death. I have been writing on this blog on these topics for a while now. I want to believe that some folks are thinking differently about end of life care for frail elders.
But I am certain that the political climate is such that our leaders wouldn’t dare speak too loudly about the benefits (so many!) of a more accepting attitude toward advanced aging and death. Benefits like increased comfort and dignity and also a HUGE cost savings for the economy. But to try to talk about allowing natural death with comfort and cost savings in the same sentence is risky business. I was shocked to hear from a reader who identified herself as a right to life supporter and a person who felt I “wanted to kill old people.” I was also sad and angry. It is exactly this thinking that stops the change that needs to come. Instead, I am afraid that economic necessity will increase the ways that care is already being rationed. This is the reason that we don’t hear national discussion of Medicare and Medicaid costs in the election thus far. Locally, I hear not a word about this from those who are trying to create a single payer system here in Vermont. So I have little hope that things will change any time soon. Sorry.
I want to say that one day “a change is gonna come”. Change that brings love and stronger connection between loved ones as eventual death is accepted and our time together becomes so much more precious. Suffering is lessened and dignity is increased…one family at a time. Oh yea …and we will also spend far less on Medicare and Medicaid. So there. I said it. What are ya gonna do about it?
Have courage my love.
June 2nd, 2012
Thank you, Joyce Anne Ware Longfellow, for the wonderful book, I Could Never Say Goodbye: A Daughter’s Journey to the End of Life with Mom and Dad. Here is a description of a daughter’s time spent with each parent as they approach the end of life, and truly….beyond. The nitty gritty details of those last hours, days and weeks are included too, in ways that don’t deny the nature of the body’s decline in function and the, often extreme, demands they place on the caregiver. Here is a woman who had the means and the motivation to take this time, away from all other aspects of her life, in order to fulfill her parents wishes for their own good death. And she uses that time to honor the love that moves through each of these precious loving and loved ones, in the their own ways and in their own time; Mother. Father. Daughter.
Beyond the informative and beyond the inspirational, Joyce Anne’s book embodies the qualities I have repeatedly insisted are imperative in order to accomplish the feat of accompanying an elder through their dying; love and courage. On each and every page – love in abundance. Love that transcends past lapses of conscience and control. Love that goes beyond forgiveness to acceptance of the fallibility of we humans as we move through this life and beyond hurt and anger. But the courage is here too and also in abundance. Not only the courage that made Joyce Anne able to take on the long and difficult care giving of each parent, but the courage to share that time with us. The shared history of each parent with their daughter is given honest airing while each relationship journeys through conflict and understanding to arrive at true forgiveness that allows love to be the last word as first father and then mother move to the next life. This too requires courage.
I am grateful for the example that Joyce Anne has set for me as I too write about advanced aging, frailty and death. So many would deny the very existence of deficits as we age and many more would fiercely decline the help of others as these deficits bring us to dependency. This book reminds us it is only by accepting the assistance of others that we will be able to achieve the death of our own choosing. The courage of all who are loved and loving is apparent on each page of this wonderful book.
Thank you, Joyce Anne.. and
Courage My Love