02/11/15

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.

Dementia

But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.

If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.

And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.

Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.

Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.

Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.

Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.

For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.

By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.

Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.

That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.

In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.

Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”

They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.

Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)

In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.

Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.

But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?

That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.

“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.

As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar.
Complete Article HERE!

05/12/14

Lonesome And Alone, A Matter of Life and Death

With all the lonely people in the world it’s a crime to be lonely alone. Remember, intimacy is not a gender issue; it’s a human issue.

 

My client, Janice, is 62 years old. She has late onset diabetes and rheumatoid arthritis. She is a neatly dressed, silver haired woman with gnarled hands and feet. The thick lenses of her glasses sit heavily on her pleasant, open face. She is of medium build, and walks with the aid of a cane. She has the shy, nervous demeanor of a young girl, often absent-mindedly fidgeting with the buttons on her favorite mauve sweater. She is a Red Cross volunteer and a recent widow. She was raised a Methodist in Alton, Illinois, a small town just across the Mississippi River from St. Louis, but she currently has no religious affiliation. “I miss not having a church to attend. At least the social part of it.”

arthritis_handsHer husband Albert died in the hospital of congestive heart failure 18 months ago. Albert’s sudden death dramatically changed her life. She was forced to give up the comfortable home they shared for nearly 30 years and now lives alone in a modest apartment in a subsidized senior housing complex.

She says she is often alone and lost in her profound grief. “Our marriage was a traditional one, the kind that was popular fifty years ago. Albert was solely responsible for the family finances. He shared little of the intricacies of these things with me. I’m afraid that he kept me completely in the dark about all of it.” Albert withheld their troubled financial situation from her in order to shield her from the unpleasantness. He died without a will or an estate plan, leaving Janice completely lost and befuddled.

Albert died in intensive care and Janice was unable to be with him when he died. She has a great deal of guilt about this. She claims that her biggest fear is “dying alone in some awful hospital, hooked up to a bunch of beeping machines.” However, she’s just as anxious about becoming dependent on strangers. “You see, I’m losing my eyesight to the diabetes.”

I ask her, “Why do you suppose it’s so difficult for you to ask for help?”Assisted-Living

“I don’t know. Maybe I’m just afraid to ask for what I need. When Albert was alive we used to look after one another. Of course, I don’t want to be a bother either. I’m embarrassed to admit it, but there have been times that I have gone to bed hungry because I couldn’t open a can of soup; my arthritis being so bad. But would I call a neighbor and ask for help? No! Well, there’s no fool like an old fool. That’s for sure. I don’t want this to continue. Oh, how I wish I had family to count on.”

I ask Janice about her relationship with her husband, Albert.

“I’ve been with only one man my entire life, my husband Albert. Our sex life was very conventional. And if the truth be known, there wasn’t even much of that. I always wondered if I disappointed him. I guess now I’ll never know. You’ll have to excuse me, but this makes me very uncomfortable. I guess I’m just old fashioned. I was brought up believing that ladies don’t talk about such things in polite company.”

silence“Ya know, Janice, there are a lot of us who make the distinction between sex and intimacy. Perhaps, you don’t miss the sex, but I’m guessing you miss the intimacy. Am I correct?”

“To tell the truth, I don’t miss it at all. The sex, I mean. But, yes, I do miss the companionship. I’m so very lonely now. I mean, you get pretty attached to a person after thirty-nine years together. What I wouldn’t do for just one more hug from my dear Albert. It’s the predicament of so many women that I know. The senior center is filled with widows who are starving for affection. It’s so unfair.”

“Yes, it’s criminal; all these lonely people being lonely alone. It’s my experience that many seniors and elders don’t know how to form intimate relationships after the death of their spouse. They are often self-conscious about their needs and desires, like sex, dating, or even forming a close relationship with someone else. Rather than put themselves out there to find fulfillment, they, like you Janice, follow the path of least resistance. Their intimacy needs shrivel and die long before they do because they lack an outlet for their affections. Sad to say, this can leave them cranky and curmudgeonly. It’s such a waste, don’t you think?”

“Yes, I certainly think I have a tendency to be like that myself. Yet I have this overpowering fear of dying alone. And I don’t mean alone as in solitary. I would feel just as alone if the only people attending me as I die were people I didn’t know. So it’s not about care, really, it’s about being loved. Is that so much to ask? Maybe I should just stop now.”our-world-is-hungry-for-love

“We can talk a break, if you’d like, but I think we’re really on to something here, don’t you agree?”

“I’ve never had much of an interest in sex and I don’t see that changing at this late stage in the game, but I do continue to be interested in friendship. Since the death of my husband I’ve been very much alone. I so miss the companionship we used to share. Do you think it’s too late for a person like me to find that kind of thing again?”

“Of course it’s not too late, Jan.” May I ask you if you are taking hormone replacement therapy? I’m assuming that you are post-menopausal. Am I correct?”

“I went through menopause years ago, but I’ve never taken hormone replacements. Why do you ask?”

“Many women find that their libido, their interest in sex, disappears after menopause. It’s simply a chemical thing that happens as one ages. Many post-menopausal women don’t know about this option and so they go through some of the best years of their life without knowing the joys of sexual intimacy unfettered by concerns of becoming pregnant. I used to be a strong advocate of natural hormone replacement for all post-menopausal women. However, nowadays I encourage women to engage their doctors in a frank conversation about the pros and cons of this therapy. There is a known connection between hormone replacement therapy (HRT) and breast cancer. Breast cancer survivors who took HRT to relieve menopausal symptoms had more than three times as many breast cancer recurrences as survivors who did not take HRT.”

“I had no idea. But what if I’m not interested in sex, should I bother my doctor about this?”

alone_and_lonely“Like I said, there’s sex and then there’s sensuality and/or intimacy. Maybe you have no interest in the one, but it sounds like you still want the other. You might find that HRT could help you overcome some of the barriers that appear to be in place preventing you from forming new and life-affirming relationships. Besides, the benefit of discussing this issue with your physician is two-fold. First, you’ll get information you need to make an educated decision about the therapy itself. And second, you will have established a working relationship with your OB/GYN on the topic of your intimate life.”

“I see. You make a good point, Richard. Thank you.”

“Ya know, Jan, there are plenty of options open to you if it’s simply companionship you seek. You’re living in a senior complex, right? Have you met your neighbors? Why not strike up a conversation? Join in the planned activities. What are your interests? How about taking a class? What about the Red Cross; are you still volunteering? I’ll bet you have loads of leisure time. It is often said that an acquaintance is a friend just waiting to be discovered. And if that’s true, then a friend could become a companion, and a companion could even become a lover or partner. But like everything else that’s worthwhile in life, it will take some time and energy on your part.”

“I always have the best of intentions, Richard. I leave our sessions full of hope and plans for getting out of this rut I am in. But, by the time I get home, all the wind goes out of my sails. I feel like such a failure.”

“No need to be self-defeating. You have the will to make the changes you want; now all we have to do is develop a strategy for accomplishing your goals. You mentioned something very touching earlier. You spoke with such eloquence about the plight of all the lonely senior women you know. Have you considered having another woman as a companion? Like I said, with all the lonely people in the world it’s a crime to be lonely alone. Remember, intimacy is not a gender issue; it’s a human issue.

02/21/14

Bringing To a Close a Long Life Together

“Each of us is entitled to intimacy and pleasure in our life, regardless of how our body looks or at what stage of life we are at. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”

Clare, 73, and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, which was in remission for over ten years, has recurred. This time it is considered untreatable. She has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around. I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end-of-life care I want.”

our-livesClare has lived a rich and full life. “I was a career woman long before there was such a thing as a career woman. I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.

Her youngest son Stan, her one and only ally in the family, brought her to our meeting. Stan says, “Oh yeah, she’s feisty all right. There’s no flies on her, and the ones that are there are paying rent.”

Clare’s biggest concern is her family. They are pressuring her to fight against death even though she doesn’t want to. She wishes that they would join her in preparing for her death rather than denying the inevitable.

“I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.Elderly-couple

I try to tell myself that my Charley will be just fine after I’m gone. After all he does have our four grown kids and their families to look after him. But deep down, I know how lost he’ll be without me. Even after all these years, he still needs me to help him find a missing sock!

Whenever I try talking to him about how he’ll manage when I’m gone, he gets this awful flush across his face and starts shaking like a scared little boy. It makes me feel so terrible. I feel so bad for upsetting him like that.

I’m so confused! I want to talk to Charley about all of this. He’s my husband and has been my best friend for well over fifty years, but I honestly don’t know how to reach him on this one.”

Clare straightens herself up in her chair and continues.

“Stan, here, is the only one I can talk to. Everyone else, including my husband, won’t hear a word when I start talking about planning my funeral or who will get my antique Tiffany lamp. They just say, ‘Oh, mother, stop talking like that, you’ll outlive us all.’

I know they mean well. They’re just scared and upset. But boy oh boy, it’s really getting under my skin. I know I only have a short time left to live, so I want it to be real. I’m sick of always having to smile and pretend when I’m with them. It’s about time for them to start considering my feelings for a change.”

reason to smileClare’s immediate concern and the reason for our get together is her husband Charley. She is afraid that they are drifting apart right when they need each other the most. I ask her for a little background on their intimate life together.

“I was well into my thirty’s when the woman’s movement began. It was a time of great awakenings for me. Charley was threatened, of course, but I was able to win him over in time. It was only then that our sex life started in earnest. I finally realized that sex could be about pleasure and not simply about duty. What a liberating experience that was!

Even now Charley and I are intimate, or were until the last couple of months or so. After we both turned 60 our sex wasn’t like when we were youngsters, all heated and hormonally driven, but it’s just as special. Oh, I’m so glad I am able to talk about this with you.

My main concern is the medications I’m taking for the pain. I’m woozy when I take them, but irritable without them. I want to be more available to Charley for the closeness that’s so important to each of us, but I’m often too out of it. This is a problem for Charley too, because he doesn’t know how touch me anymore. And so, I’m afraid, he keeps his distance. This only makes matters worse for the both of us.

How do I change this? Or maybe there’s no changing it. Maybe it’s just over. What a terribly sad thought that is.”

I reach out for Clair’s hand. “I am touched by the loving depiction of the intimate life you’ve had with your husband over the years. It can’t be easy for either of you to see this wind down. However, the closeness and tenderness you’ve had throughout your marriage need not stop now.eldery hands

May I ask; do you still sleep together in the same bed? Would you be comfortable initiating a little cuddling with Charley? Good! Then I’m going to suggest a regiment of spoon breathing and guided-hand touch that I’m sure will work for you both. You will, of course, need to take the lead role in this since, as you say, Charley no longer knows how to touch you, but once he gets the hang of it and he has your permission to do so, he can continue even when you’re not able to reciprocate or even respond.

Allow me to quickly explain spoon breathing. Here’s what you do; lay on your side with Charley on his side close behind you like two spoons. Then see if you can match one another’s breathing pattern. You will be amazed at how calming and comforting this will be for you both. It will also be a very effective way to reestablish a threshold for what is possible between the two of you now, in this final stage of your life.

Now the guided-hand touch; take his open hand in yours and guide it to where you like to be touched. Show him how you like to be touched where he is touching you. Long strokes, slow strokes, short strokes, soft strokes, or just having his hand rest on you, whatever. Show him the kind of pressure you are comfortable with where he is touching you. Once you’ve established a simple routine of breathing and touching, give Charley permission to carry on even if you happen to fall asleep. Because this breathing and touching technique is so gentle and loving, it should be able to serve you even as you are actively dying. But you’ll have to let Charley know that this is what you want and need. You could tell him that you want to die in his arms. What an ideal way to bring your life together to a close. Do you think Charley will accept your invitation?”

“I can’t say for sure, but I think if I suggested it to him in a way that lets him know that he would be doing it for me, it might work. But I’m not sure about what I should say.”

everyone dies“When words fail to communicate what is in your heart, you can always rely on touch. Maybe you will find that nothing needs to be said at all, Clare. Draw him close and keep him near you with touch. Something tells me Charley will find this irresistible. It could be the fondest of farewells. Something he’ll never forget.

This is my philosophy. Each of us is entitled to intimacy and pleasure in our life, regardless of how our body looks or at what stage of life we are at. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”

07/25/12

A DNR Tattoo? Really? Great Teaching Image for Geriatrics or Palliative Care

by: Alex Smith

Perhaps you have said, or heard someone declare, “I want DNR tattooed across my chest!”

Well, someone actually had it done. See this image in JGIM of the tattoo and the unusual story behind it. In this case, the DNR tattoo was the result of a lost bet in a drinking game – bad idea jeans – the patient actually wanted to be full code!

In an accompanying editorial, Bernie Lo and I describe the problem with actually tattooing DNR across your chest. As we say, the idea is intuitively appealing, but flawed as policy.

This could be used a teaching image about respecting individuals’ rights to avoid resuscitation. The idea is to provoke a thoughtful discussion. Questions for trainees could include:

  • What is behind the idea of the DNR tattoo? Why would someone say that, or do it?
  • Imagine you are seeing a new patient who arrests in front of you. Preparing to do CPR you see a DNR tattoo on the chest. How do you respond? Why? Should DNR tattoos be respected?
  • What can we do to protect the interests of people who really do not want to be resuscitated?
  • Should we as a society put greater ironclad protections in place for people to irrevocably fix their code status at DNR? What are the risks? What if someone codes from anaphylaxis? Chokes on some food in front of you?
  • What do you think about allowing leeway or flexibility in decision making? In all cases? Giving the surrogate leeway? The clinician? Do the advance directive forms or POLSTs you use allow for leeway? Should they?
  • What do you think about Ulysses contracts? (Then Ulysses said, “Eurylochus, come quickly! Tie me to the mast, for I shall hear the Sirens song and live!”). Caringadvocates offers such documents (run by frequent GeriPal commenter Stan Turman). Example: do not give me food or water when I have advanced dementia, no matter what I say or do.

Feel free to share your teaching experiences in the comments. I think the geriatrics and palliative care communities really appreciated the discussion about how to use this video from a previous post as a teaching tool.

Complete Article HERE!

06/26/12

Care homes ‘deny elderly people sex’

Care homes often deny elderly people the basic right, and one of their few remaining pleasures, to continue having sex, according to a new study.

Many older people, including those with early stage dementia, enjoy sex while they live at home, but this changes once they move into residential care, said the Australian authors of a paper in the Journal of Medical Ethics.

They blame a lack of privacy, age discrimination and fears about the legal implications should a patient be found mentally incompetent to give consent.

“The formation of relationships, physical intimacy and the expression of sexuality are a basic human right and a normal and healthy part of ageing,” wrote the authors from the Australian Centre for Evidence-Based Aged Care.

Yet most facilities do not have formal policy guidelines or staff training aimed at allowing residents to continue being sexually active.

“Privacy remains a problem, with residents often not able to lock their doors and most rooms equipped only with single beds,” said the paper.

“For residents with dementia, sexuality is viewed with even greater anxiety, either being labelled ‘inappropriate’ or a ‘challenging’ behaviour or as a risk to the resident.”

The team acknowledged the difficulties in determining the legal threshold for informed consent in elderly patients with dementia, but argued this should not be an excuse for denying them their rights.

“It is important to remember that dementia is defined in stages, with early or mild dementia manifesting as mild forgetfulness or confusion that is often mistaken for a normal part of ageing,” they wrote.

“Clearly there is a significant difference between the capabilities of a person with mild dementia and one with advanced or final-stage dementia and, therefore, a single approach to sexuality and ‘people with dementia’ is inappropriate.”

Complete Article HERE!