"Being Mortal"

[Joe Frickin' Friday]

Parallel to Eric's advice to not leave a mess behind when you die, I'd like to recommend a particular book that I recently finished:

 

Being Mortal: Medicine and What Matters in the End, by Atul Gawande

 

In the book, Gawande talks about how society and modern medicine have fallen short in helping people live well as their health declines in their senior years, and in helping people make good decisions about how to deal their impending death if/when terminal illness finally makes it inevitable. He offers considerable historical perspective, including the case of his own grandfather, who lived to be 110 in a rural Indian village. He also recounts the specific stories - some good, some bad - of several elderly or terminally ill people to illustrate his points.

 

If it sounds depressing, well, yeah, it kind of is - especially near the end of the book, where he recounts the final years, days, and minutes of his own father's life as an advancing spinal tumor takes its toll. But there's good news: he points out how things are getting better. For seniors in declining heath, these days there are more and more options for them to live well in spite of their infirmities; for the terminally ill, doctors are slowly getting better at partnering with their patients to understand what their goals are in the limited time they have left, which helps them to offer the best counsel on how to achieve those goals.

 

If you have a family member who is facing declining health due to age or terminal illness, I think this is a really important book for you to read to help you understand what they're dealing with. Moreover, you yourself may someday be in their shoes - which means, IMHO, just about everyone ought to read this book; these things can be unpleasant to contemplate, but ultimately much less difficult to deal with if you've put some thought into it before it becomes absolutely necessary to do so.

[lawnchairboy]

Great advice, I see a bunch of bad situations.

 

 

 

[Asymmetrical]

Having also recently finished reading this book, I agree with Joe's excellent summary entirely and highly recommend it. It's something we will all likely have to contend with someday.

[Bud]

We are on the boat in Pender Harbour, BC. My wife showed me FB posts of her cousin who is in hospice. Surrounded by her family. All of them smiling or laughing.

 

What a wonderful way to celebrate a life, and death.

[Medic Mike]

I have not read this book, but as a Paramedic I see every side of this discussion. More time than I care to remember I have to preform "heroic" measures on someone who had a terminal illness and or were in the late 90's with a health history as long as their age. Almost every time this happens it is a family member demanding we do these measures. It is more of a cathartic event for the family with them knowing they "tried" everything. When I have the time with my patients and hopefully along with the families, we discuss end of life care. I carry hospice information with me and we have an honest and open discussion about the next stages of life and how to prepare. The patients are very receptive, for the vast majority of them know the end is near, it is getting the family on board with the decision(s). To echo the sentiments from everyone else, until we talk openly and honestly with our loved ones about this, know and understand their wishes and desires our personal biases will overpower in times of fear and distress.

[John Ranalletta]

"I know you love me - now let me die."

[mikeR1100R]

Absolutely! I am a respiratory therapist and I too have performed "heroic" measures on these poor elderly chronically ill people. Most families do not know what they are asking when they want us to "do everything". Large-bore IVs, ventilators and CPR are so invasive and painful. Death is not losing, it is in the end inevitable. I have not read the book cited in this thread but I am a firm believer in allowing our fellow humans to exit this life when it is their time in the most dignified and hopefully painless way possible.

[Selden]

...Death is not losing, it is in the end inevitable. I have not read the book cited in this thread but I am a firm believer in allowing our fellow humans to exit this life when it is their time in the most dignified and hopefully painless way possible.

Thank you for that elegant and concise summation. My father-in-law died in the palliative care wing of the Atlanta VA medical center. My wife and I discussed options and likely outcomes with a counselor who was definitely suited for this work, and about 48 hours before he died, they put him on a morphine drip, which calmed him (and my wife), and in the end he passed peacefully with his daughter holding his hand.

 

Both he and we received outstanding care and support from the Atlanta VA medical staff, both at the end of his life and for the previous 4 years.

 

My mother will be 95 in September, and is beginning to show signs of her age. I don't look forward to a prolonged decline, but we take what we get. Death is not losing, it is in the end inevitable.

[Joe Frickin' Friday]

Absolutely! I am a respiratory therapist and I too have performed "heroic" measures on these poor elderly chronically ill people. Most families do not know what they are asking when they want us to "do everything". Large-bore IVs, ventilators and CPR are so invasive and painful. Death is not losing, it is in the end inevitable. I have not read the book cited in this thread but I am a firm believer in allowing our fellow humans to exit this life when it is their time in the most dignified and hopefully painless way possible.

 

DNR orders are one issue that gets discussed in the book, but the larger issue that the author is pushing is for the idea that doctors and patients should cooperate to understand what treatments ought to be pursued, and what treatments ought not be pursued. If (for example) you've got a month to live, and the next round of surgery or chemo might add a second month to your life, but you'll probably spend both of those months in a hospital bed dealing with severe side effects/complications, do you want the treatment, or not? Some people will want it, and some people won't - but the discussion must begin with an honest and explicit appraisal by the doctor of what the prospects and probabilities are, and an honest introspection on the part of the patient regarding what quality of life is enough to make life worth living. Gawande suggests this is where modern medicine has fallen short, but is finally starting to come around.

 

A relevant quote from the book:

 

The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don't want a general who fights to the point of total annihilation. You don't want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn't, someone who understood that the damage is greatest if all you do is fight to the bitter end.

[markgoodrich]

Let me add a comment, directly related to Gawande's point of view:

 

I've been a hospice volunteer for several years. Several times a year I am called out to assist patients and (mainly) their families. A doctor in the U. S. can prescribe hospice care by specifying the patient has six months or less to live. In Austin, at the nonprofit I work work, the AVERAGE STAY is seven days before the patient dies. So what I encounter is an almost-dead patient, physically and emotionally exhausted family members/caregivers, and lives on an interminable hold.

 

Six months of assistance is available. Barely more than six days is the usual "stay." Gawande makes the point, but I want to reiterate, from my perspective. Docs are loathe to say the "terminal" word, anxious to do no harm by causing patients and families to give up hope. This is, in my opinion and experience, wrong. Family members are loathe to accept, to hear, that their loved one is going to die, and soon. They'll "fight" the disease. Acceptance is counter to our culture, but is critical to the gentle, loving letting go, is critical to getting assistance which will allow the family, the caregivers, the patient, to maintain physical and emotional strength, thereby allowing for a healthy dying.

 

If you or a family member is given a diagnosis that death is coming, surrender to the inevitability, offer more loving care via the help of hospice organizations sooner, soonest, immediatly, save yourself for what is important, the human connection as life ebbs.

Edited June 5, 2016 by markgoodrich

[Glenn Reed]

Mark,

 

Thanks for your perspective, and even more so, your volunteer work. It's not something I could even imagine doing, but I'm glad there are people like you, who step up to the plate and do it.

 

Glenn

[lawnchairboy]

Right on.

[Joe Frickin' Friday]

In Austin, at the nonprofit I work work, the AVERAGE STAY is seven days before the patient dies. So what I encounter is an almost-dead patient, physically and emotionally exhausted family members/caregivers, and lives on an interminable hold.

 

I don't know what kind of average hospice stay one should find to be reasonable, but seven days - with patient and family arriving in the conditions you describe - sounds to me like a tragic, abysmal failure of the health care system, of patients and family members who have been led by experienced health care professionals to believe (or allowed to delude themselves into believing) that there was meaningful hope of a cure and good days to come. It's horribly sad to think about how many good or adequate days these people have sacrificed in pursuit of a cure that was never going to be. This is where care providers can make big improvements, and where patients - when dealing with a care provider who is perhaps being less forthcoming than is needed - can steer the conversation toward explicit and useful (if unpleasant) truths.

[OoPEZoO]

Thanks for the perspective Mark. Your passion for your profession comes through in that post. My Wife has worked in the geriatric field as an RN for quite a few years, so I get the occasional glimpse into what some of these people/families go through. I've been blessed that my extended family has been remarkably healthy considering the hard working lives a few of them have led.

 

This is a good topic and should be openly discussed more often.

[Mike]

And now for the lawyer's viewpoint:

 

Strictly from a legal perspective, there are things you can do to make things easier for your loved ones. At the end of life, medical decisions, dealing with mundane personal business matters, and the handling of what you leave behind can be vastly simplified by having these four documents:

 

-A Will: This document directs your executor, or "personal representative," how to dispose of your property, and, if applicable, tells others how you want members of your family cared for. Without it, your property will be disposed of in the manner your state's laws dictate. Ditto for your minor children.

 

-Durable or Springing General Power of Attorney: This document permits another to act on your behalf in all legal matters, ranging from managing your bank accounts to selling your property. If you have full trust in the person you designate to act on your behalf (your "attorney in fact"), a durable POA may be the way to go. It's "durable" in the legal sense, because it specifically remains in effect if you're physically or mentally incapacitated. A "springing" POA comes into effect upon the occurrence of a triggering event, like mental and/or physical incapacity.

 

-A Living Will (sometimes called and advance medical directive): This is a directive to health care providers discussing what you want them to do under certain conditions. Most often it is used to direct providers to withhold death delaying procedures if your death is otherwise imminent.

 

-A Medical Power of Attorney: This document allows one or more people to direct your medical care, direct the donation of organs, and do a number of other things related to your care.

 

Lawyers often make a pretty good living drafting these documents for people. If your family or financial situation is complicated, you should probably talk to a lawyer about estate planning. It may be wise for you to set up a revocable trust to permit your property to pass to others without going through probate.

 

But, here's the thing: there are at least a couple of good web-based businesses that will sell you these forms and even walk you through filling them out in a Q&A format for a very low cost. This will work very well for most people. The only thing you have to be very careful about is ensuring that the documents are executed according to the requirements of your state, such as the number of witnesses, or attestation before a notary public. This will be evident from the documents themselves, as well as the on-line instructions. If you blow this--for example, ignoring a requirement to have your will witnessed by two non-heirs--the document may have no legal effect.

 

Seriously . . . don't ignore this. At a minimum, create and sign a living will and a medical power of attorney. I don't want to hear about you being hooked up to tubes in a vegetative state because you were too flippin' lazy to spend a few minutes sparing others the agony of dealing with these things.

 

(Usual Disclaimer: I can't enter into an attorney/client relationship with you, so don't take this as personal legal advice. If you're uncertain about what makes the most sense for you, find a local lawyer and have a discussion.)

[Lion_lady]

Having read the book myself, the single most important take away I got from "Being Mortal," is to have the conversation with your aging loved ones BEFORE, they are in such decline that you and yours are reacting to situations rather than responding to expected issues.

 

We, the young, have such different perspectives from the aged. For us, getting out of bed and making it to the toilet in the night, is a simple thing, but as the body declines with advancing years, even that becomes problematic.

 

I was an alternate juror in a truly sad and ill-advised malpractice case, a number of years ago. The "victim" - deceased - was 75 or so, very overweight, diabetic, and unable to walk. He was the lodgepole of his immediate family. When he was hospitalized, and declined, needing greater and greater (surgical) measures to keep him alive - look up Toxic Mega-colon - the surgeons could only do so much. The family was looking for miracles, but the end was inevitable. I felt badly for the charged surgeon (who was determined to NOT be at fault), and the family as well. They all looked so haunted.

 

Death is inevitable. Talk to your loved ones about how they want to leave this world with dignity.

[Red]

Mike,

The spousal unit and I have all these docs in place. We are both the last of our line. Each has an elderly sibling in another state. So the question is, what good is all this planning if you tip over, the ambulance comes, they and the docs take all these heroic measures because there is no way to inform the whole world of your legal intentions?

Also I believe travelling out of state and out of country is problematic as well as some of these docs or only good in your state of residence. Perhaps you could address these issues.

[Mike]

Mike,

The spousal unit and I have all these docs in place. We are both the last of our line. Each has an elderly sibling in another state. So the question is, what good is all this planning if you tip over, the ambulance comes, they and the docs take all these heroic measures because there is no way to inform the whole world of your legal intentions?

Also I believe travelling out of state and out of country is problematic as well as some of these docs or only good in your state of residence. Perhaps you could address these issues.

 

Nothing's 100%, but you could carry copies of these documents with you or consider something like the options available from MedicAlert.