Conscious Living – Page 191 – The Amateur's Guide To Death & Dying

Three terms that may arise in end-of-life care discussions are ‘withholding treatment’, ‘withdrawing treatment’ and ‘palliative sedation’. They are often misunderstood and sometimes confused with physician-assisted suicide or euthanasia. Understanding these terms can assist in decision-making and ensuring quality of life.

Palliative care is about achieving the best quality of life until the end of life. Each person’s situation, experience of illness, goals of care and approach to care are unique. Many factors influence the decision to withhold treatment, withdraw treatment or make use of palliative sedation. Each requires discussion and agreement between the patient and health care providers. If patients are not able to participate in these discussions, family members or substitute decision-makers are involved on their behalf.

Withholding treatment and withdrawing treatment

Traditionally, medicine has been focused on extending life. However as death approaches, extending life may not be in the best interests of the patient. A number of treatments and interventions can artificially extend life at end of life: certain medications, artificial nutrition, treatments such as dialysis, transfusions, radiation, and ventilation for breathing. It is important that patients and families understand the intent and possible risks or benefits of the care they are receiving. In Canada, people with advanced illness, or their substitute decision-makers, who are properly informed and able to make health care decisions can stop or decline treatment, even if that treatment might prolong life. While withholding treatment and withdrawing treatment refer to actions taken by health care providers, the actual decision to decline or discontinue treatment rests with the patient or the patient’s family or substitute decision-maker. Declining or discontinuing treatments that artificially extend life doesn’t mean that symptom control such as pain management and emotional support stop. Care and treatment focused on maintaining comfort continue, allowing the person to die naturally from the disease.

The first three cases below are examples of withdrawing and withholding treatment in the case of advanced disease. The cause of death in each case is the underlying illness. The intention of the plan for care is to treat symptoms and keep the patient as comfortable as possible but not prolong the natural dying process.

Case 1

Withdrawing treatment: Linda wants to stop dialysis

Linda has had diabetes for many years and has developed kidney failure. She has been on dialysis to keep her kidneys functioning. Because of dialysis, she has lived long enough to see the birth of her great grandchild eight months ago. But Linda is now growing weaker; she can do less for herself and always feels tired, especially on her dialysis day. It is getting more difficult for her to get back and forth to the dialysis clinic, and she now thinks dialysis is only prolonging her dying. After discussing her thoughts and feelings with her adult children and health care team, Linda decides to stop the dialysis treatment. The health care team controls Linda’s symptoms caused by kidney failure and she dies two weeks later with her family at her side.

Case 2

Withdrawing treatment: Jorge wants to stop transfusions

For three years, Jorge has had leukemia, a cancer of his blood. The cancer has filled his bone marrow to the point that he can no longer make enough red blood cells to live without transfusions. Similarly, Jorge can no longer make enough white blood cells, so he has had a number of infections. At first, his body could fight off these infections with the help of antibiotics. Then he would feel better and have enough energy to enjoy his photography hobby and his life with his partner. But after the last few infections, Jorge’s energy has not returned enough for him to go out and take photographs. He spends most of his day sleeping and has found it harder to go to the hospital for blood transfusions. His partner and friends are willing to help him with everything. But he is struggling with feeling so dependent.

Jorge talks with his health care team about how his life is now. “I can’t take this anymore,” he says. His team reminds him that he can always decide not to treat another infection when it comes along. He has the right to say no to antibiotics since they no longer help him recover from the infections. He can also stop his transfusions if they no longer help. He has the right to decide to stop all treatments and let nature take its course. Jorge decides to stop the transfusions and to not receive antibiotics if he gets another infection. Jorge’s partner supports his decision. She has noticed changes in Jorge and that the treatments are no longer making him feel better. Two weeks later, Jorge gets an infection. He experiences some shortness of breath but his team controls it with small doses of pain medication. He dies peacefully several days later.

Case 3

Withholding treatment: Marjorie’s family declines life-prolonging treatments

Marjorie is a frail older woman living alone in her own home. She has always told her nephew and niece that if she can no longer live there and manage her own affairs, she doesn’t want to live long. “Don’t put me on machines if I am going to end up being spoon fed,” she has said. One day, in terrible pain from a sudden, dreadful headache, she calls her nephew. Her speech is slurred and he can hardly understand her. By the time he gets to her home, she is barely able to respond to him. When the ambulance comes, the paramedics put a tube down her throat to help her breathe. At the hospital, a scan shows Marjorie has had a massive stroke that she is unlikely to recover from. The emergency doctor explains that if she were to have any chance of surviving, the health care team would need to maintain the breathing tube and connect their aunt to a breathing machine. She would also need drugs to reduce the swelling in her brain. It is expected that even if she does wake up, Marjorie will have physical and maybe cognitive impairments, will not be able to live alone, and will need help with all of her care.

Marjorie’s nephew is her next-of-kin and her substitute decision-maker. He knows that she would not want to live if she were unable to be independent in her own home. He asks if there are any other options. The emergency doctor tells him that since she has almost no chance of returning to her former life, Marjorie’s nephew could decide to remove the breathing tube and not to start the medication to reduce the swelling in her brain. The health care team would focus on treating any pain or other symptoms that she might have and allow her to die a natural death. Since that seems most in keeping with Marjorie‘s wishes, her nephew agrees. He and her niece stay with her until she dies 12 hours later.

Case 4

Withholding treatment: Mabel’s family decides against a feeding tube

Mabel is an 88-year-old woman who has lived with dementia for three years. In recent months she has become weaker, unable to walk, spends most of her day in bed and is having increasing difficulty swallowing food or fluids without coughing. Her daughter worries that she will “starve to death”. The doctor and staff share information with her daughter about the typical course of dementia, and how interest and intake of food and fluids diminishes. After talking with the staff and reading articles on this topic, the daughter understands the natural progression of dementia and that her mother will not experience hunger. She agrees to focus on good end-of-life care that includes sips of fluids or careful hand feeding if her Mom is awake and able to safely swallow, or good mouth care to prevent dryness.

What About Food And Fluids?

Towards the end of a progressive, life-limiting illness, people reach a point where they can no longer eat or drink. They may be too weak and unable to swallow, or always sleeping. When people become too weak to swallow, they may cough or choke on what they are trying to eat or drink. Providing food and fluids at this point usually requires a feeding tube. These tubes can be placed through the nose into the stomach, or they can be surgically placed directly into the stomach through a hole in the wall of the abdomen. At such an advanced point in an illness, our body systems are shutting down and our bodies are not able to use the calories in food. People understandably may be concerned that if someone is not being fed, they are being ‘starved to death’. However in these situations, it is the illness that determines the point where food can no longer be taken in; even if it could be, the body would not be able to use it to become stronger or to live longer. Hunger tends to be absent, and the sensation of thirst is typically related to dryness of the mouth, which can be addressed with good mouth care.

Feeding with the help of medical devices – including feeding tubes – is a medical procedure, similar to providing antibiotics or blood transfusions through an intravenous (“IV”). Therefore, when an advanced illness progresses to the point that someone can no longer eat or drink, the person or substitute decision-maker can indicate that a feeding tube is not wanted as it would only artificially prolong the final phase of illness.

This is a controversial and emotional issue as providing food and fluids feels like a basic way people nurture and care for each other. Nonetheless, patients and substitute decision-makers have the right to decline medical or surgical procedures such as inserting feeding tubes and other medical devices.

Palliative sedation

Palliative sedation involves giving medications to make a patient less aware, providing comfort that cannot be achieved otherwise. A legal and ethical practice in Canada, its goal is not to cause or hasten death but to keep the person comfortable until death. The decision to begin palliative sedation is made after an in-depth conversation between the patient (if able) or the family or substitute decision-maker, and the physician. Palliative sedation is considered a last resort in the last days of life, when all possible treatments have failed to relieve severe and unbearable symptoms such as pain, shortness of breath, or agitation from confusion.

While the person is sedated, the health care team monitors and reviews his or her condition and comfort and the family’s reaction to the treatment. The medications and dosages can be adjusted, resulting in a range from a slight calming effect to full sleep. The sedation can also be reversed, so the person is not completely asleep during the dying process. Research has shown that palliative sedation does not shorten life. People die from their disease – not from sedatives.

The two cases below are examples of how palliative sedation eases suffering and keeps a person comfortable until he or she dies from disease.

Case 5

Palliative sedation: Jim is confused, agitated and frightened

Jim has severe liver failure from hepatitis C. He can’t have a liver transplant because of other medical problems. His liver is not cleaning his blood as it should and toxins are building up in his blood. The toxins are causing confusion and in the end will cause death in less than a week. Until two days ago, Jim was able to understand and agree to his treatment. Now, he tries to get out of bed during the night, doesn’t recognize his family, and is agitated and frightened. Jim’s family is distressed.

Jim’s health care team does some tests to see what is causing his confusion and agitation. The team finds that his liver function is extremely poor, and there are no other causes for his distress they can correct. This type of confusion is called delirium. Since the medications usually used to control mild to moderate delirium are not effective, the health care team and Jim’s family meet to discuss further treatment. The health care team recommends sedation to allow Jim to rest in bed and feel calm. The family agrees and the medication is given. Jim receives enough medication to help him lie peacefully in bed, and sleep comfortably. On the third day, the team reduces the medication, but Jim again becomes restless and agitated, so the medication is increased to the point where he is resting comfortably. Jim dies comfortably from his illness on the fourth day with his family at his bedside.

See also: Confusion

Case 6

Palliative sedation: Roberto wants to see his children one last time

Roberto has cancer which has spread to his liver and lungs. A large tumour in his pelvis where the cancer recurred causes him severe pain. He has received chemotherapy and radiation therapy, and is receiving multiple pain medications. Until two weeks ago, Roberto’s pain was under control. Then he came to the hospital seeking relief. Roberto is becoming weaker every day. He is likely to die in the next week because of the cancer in his liver and lungs. He desperately wants to live until his ex-wife brings his two young children to visit; however they no longer live in the same city. Although the health care team is controlling his pain as much as possible, Roberto is distressed by the pain and the waiting.
The team offers Roberto some sedation to make him unaware of his pain and reduce his distress. They promise they will reverse the sedation when his children arrive. Roberto agrees and the team starts the medication, increasing the dosage until Roberto is able to sleep. Roberto sleeps for a day and a half. When the team knows Roberto’s children are about to visit, they stop the sedation, and he is able to see them for the last time. After their visit, Roberto chooses to be sedated because of his pain. He dies two days later from his cancer.

See also: Pain

Patients and families living with advanced illness will be faced with many decisions related to their care. It is important that they be able to discuss the risks and benefits of possible treatments and interventions with their healthcare team so that they can make informed decisions that are consistent with their goals of care

Complete Article HERE!

September 29, 2015

I loved my son so much I planned his peaceful death, says brave mum of brain tumour boy

BY STEVE MYALL, SACHA LANGTON-GILKS

David Langton-Gilks died from a brain tumour in August 2012 at the age of 16 but before his death his mum Sacha planned a peaceful passing for him at home surrounded by his family

Death. It’s the final taboo, isn’t it? Especially when it’s a child. We can’t – or won’t talk – about it.

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign for earlier diagnosis of brain tumours in children and young people shatters that taboo.

To help other parents, she talks about how her son David, who died from a brain tumour in August 2012 at the age of 16, had a peaceful death at home surrounded by his family.

She emphasises that, just like we make birth plans, we should make death plans and how being able to die peacefully at home was her last act of love for her cherished son.

Family: David Langton-Gilks before his death with his mum Sacha

Here Sacha tells her story:

Days before he died, the last lucid words my 16-year-old son David, or DD as we like to call him, said were: ‘I love it here.’ He was looking out his bedroom window into the treetops where, at night, owls – one of his passions – would come to call.

It was just a few days before London 2012 Paralympics and for five years, since being diagnosed with an aggressive, cancerous brain tumour at the age of 11, DD had endured everything globally available on the NHS, including 11 brain operations, years of chemotherapy, weeks of radiotherapy, blood transfusions and a stem cell transplant.

His cancer had now spread down his spine and throughout his brain, leaving him with severe dementia. Unfortunately someone’s child has to be in the 25 percent that don’t survive this type of brain tumour, a medulloblastoma .

Three years on, I can honestly say that giving my child a ‘good’ death – without pain, calm and comfortable in his own bed, in the arms of his family with his beloved cat sitting on the bed, will be my greatest life achievement. And it gives me immense comfort in my grief.

I am speaking out to break a taboo because I remember the silence that hung over parents in the children’s cancer ward when a family ‘went home.’

We all knew that meant the child was going to die but no one could say it.

Fear overwhelmed us. If you cannot even say the word, how are you going to be able to discuss what choices best suit your family for end of life care?

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity's HeadSmart campaign — Mum: Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign

With brain tumours being the biggest cancer killer in the UK of children and adults under 40, The Brain Tumour Charity’s feedback from many parents is that they feel completely isolated with no information.

Even doctors do not say the D word because they have been trained to ‘fix’ things and view death as somehow a failure on their part.

But I see my doctors and nurses as geniuses for enabling a fabulous quality of life for my child right up to his death. This taboo about death has to be shattered so that we can improve how we care for our loved ones at the end of their lives.

When I was asked to give a speech to parents and doctors at The Brain Tumour Charity’s first paediatric brain tumour information day about how we managed DD’s death, the process itself, I didn’t know if I could do It. But then I remembered that voiceless fear in parents’ eyes at the hospital.

I call this an ‘ante-mortem class’ – one parent sharing their experience with another parent just as you would at an ante-natal class.

After all, you wouldn’t dream of giving birth without talking to another mum, reading books or going to a class, would you?

Lack of information about end of life care for children breeds fear and stops parents from even being able to articulate questions to their doctors.

David Langton-Gilks before his death with his family — Tough: David before his death with his family

On top of this is our society’s obsession with being ‘positive’ with hope. The fear that somehow by saying the D word means we ourselves might have made it happen by not being positive enough, by giving up hope. It is our punishment for being cowards.

But death is part of life and comes to us all. So how can it be negative or positive? It just is what it is – ceasing to be.

When we ‘went home’ after DD’s final scan in May 2012, which showed his cancer was everywhere and he had weeks to live, we were not doing nothing or stopping treatment – there was a detailed advanced care plan in place.

He was having full palliative care treatment co-ordinated by Southampton General Hospital which included Gold Standards Framework for end of life care at our GP’s surgery and also involved Marie Curie.

It centred on the relief of his symptoms of pain and vomiting to give him quality of life.

It just was not curative treatment as this was no longer possible.

But we still had hope – we had changed that hope from one that DD could be cured to one where he had the best quality of life possible in the limited time he had left.

Some people do a bucket list, but DD just wanted to hang out at home with me and his dad Toby, his brother Rufus, now 17, and sister Holly, now 13.

He didn’t want to spend another second in hospital and wanted to have a party with his friends. So we did.

If we had not faced up to the fact that he was going to die soon, we would have spent hours of that incredibly precious time in hospital trying to convince ourselves that the chemotherapy on offer would cure him.

DD would have hated it and we’d have been traumatised by each successive scan, contradicting what we longed to see.

My biggest agony was knowing that helping my child to suffer less meant I might have less time with him.

Nothing will ever be as painful as letting DD go, but how could I have made him suffer pain on my account? That would have made me the most selfish mother alive and I couldn’t have lived with that.

So the biggest battle was actually me.

In Childhood Cancer Awareness Month, from one parent to others going through the same thing, as a gift from my heart, I am sharing how my son died to shatter the taboo and make your battle less.

Complete Article HERE!

September 23, 2015September 21, 2015

Sexuality and Illness – Breaking the Silence

By: Anne Katz PhD

Sexuality is much more than having sex even though many people think only about sexual intercourse when they hear the word. Sexuality is sometimes equated with intimacy, but in reality, sexuality is just one way that we connect with a spouse or partner we love (the true meaning of intimacy). Our sexuality encompasses how we see ourselves as men and women, who we are attracted to emotionally and physically, what turns us on (eroticism), our thoughts and fantasies, and yes, also what we do when we are sexually active, either alone or with a partner. Our sexuality is connected to our image of ourselves and it changes over the years as we age and face threats from illness and disability and, eventually, the end of life.

Am I still a sexual being?

Illness can affect our sexuality in many different ways. The side effects of treatments for many diseases, including cancer, can cause fatigue. This is often identified as the number one obstacle to sexual activity. Other symptoms of illness such as pain can also affect our interest in being sexually active. But there are other perhaps more subtle issues that impact how we feel about ourselves and, in turn, our desire to be sexual with a partner or alone, or if we even see ourselves as sexual beings. Think about surgery that removes a part of the body that identifies us as female or male. Many women state that after breast cancer and removal of a breast (mastectomy), they no longer feel like a woman; this affects their willingness to appear naked in front of a partner. Medications taken to control advanced prostate cancer can decrease a man’s sexual desire. Men in this situation often forget to express their love for their partner in a physical way, no longer touching them, kissing them, or even holding hands. This loss of physical contact often results in two lonely people. Humans have a basic need for touch; without that connection, we can end up feeling very lonely.

Just talk about it!

Communication lies at the heart of sexuality. Talk to your partner about what you are feeling, how you feel about your body, and what you want in terms of touch. Ask how you can meet your partner’s needs for touch and affection. The most important thing you can do is to express yourself in words. Non-verbal communication and not talking are open to misinterpretation and can lead to hurt feelings. Our sexuality changes with age and time and illness; we may not feel the same way about our bodies or our partner’s body that we did 20, 30 or more years ago. That does not mean we feel worse – with age comes acceptance for many of us – but we do need to let go of what was, and look at what is and what is possible.

The role of health care providers

Health care providers should be asking about changes to sexuality because of illness or treatment, but they often don’t. They may be reluctant to bring up what they see as a sensitive topic and think that if it’s important to the patient, then he or she will ask about it. This is not good. Patients often wait to see if their health care provider asks about something and if they don’t, they think that it’s not important. This results in a silence and leaves the impression that sexuality is a taboo topic.

Some health care providers are afraid that they won’t know the answer to a question about sexuality because nursing and medical schools don’t provide much in the way of education on this topic. And some health care providers appear to be too busy to talk about the more emotional aspects of living with illness. This is a great pity as sexuality is important to all of us – patients, partners, health care providers. It’s an important aspect of quality of life from adolescence to old age, in health and at the end of life when touch and love are so important.

Ask for a referral

If you want to talk about this, just do it! Tell your health care provider that you want to talk about changes in your body or your relationship or your sex life! Ask for a referral to a counselor or sexuality counselor or therapist or social worker. It may take a bit of work to get the help you need, but there is help.

Complete Article HERE!

September 22, 2015September 22, 2015

Sexuality at the End of Life

By Anne Katz RN, PhD

In the terminal stages of the cancer trajectory, sexuality is often regarded as not important by health care providers. The need or ability to participate in sexual activity may wane in the terminal stages of illness, but the need for touch, intimacy, and how one views oneself don’t necessarily wane in tandem. Individuals may in fact suffer from the absence of loving and intimate touch in the final months, weeks, or days of life.

It is often assumed that when life nears its end, individuals and couples are not concerned about sexual issues and so this is not talked about. This attitude is borne out by the paucity of information about this topic.

Communicating About Sexuality with the Terminally Ill

Attitudes of health care professionals may act as a barrier to the discussion and assessment of sexuality at the end of life.

We bring to our practice a set of attitudes, beliefs and knowledge that we assume applies equally to our patients.
We may also be uncomfortable with talking about sexuality with patients or with the idea that very ill patients and/or their partners may have sexual needs at this time.
Our experience during our training and practice may lead us to believe that patients at the end of life are not interested in what we commonly perceive as sexual. How often do we see a patient and their partner in bed together or in an intimate embrace?
We may never have seen this because the circumstances of hospitals and even hospice may be such that privacy for the couple can never be assured and so couples do not attempt to lie together.

For the patient who remains at home during the final stages of illness the scenario is not that different. Often the patient is moved to a central location, such as a family or living room in the house and no longer has privacy.

While this may be more convenient for providing care, it precludes the expression of sexuality, as the patient is always in view.
Professional and volunteer helpers are frequently in the house and there may never be a time when the patient is alone or alone with his/her partner, and so is not afforded an opportunity for sexual expression.

Health care providers may not ever talk about sexual functioning at the end of life, assuming that this does not matter at this stage of the illness trajectory.

This sends a very clear message to the patient and his/her partner that this is something that is either taboo or of no importance. This in turn makes it more difficult for the patient and/or partner to ask questions or bring up the topic if they think that the subject is not to be talked about.

Sexual Functioning At The End Of Life

Factors affecting sexual functioning at the end of life are essentially the same as those affecting the individual with cancer at any stage of the disease trajectory. These include:

Psychosocial issues such as change in roles, changes in body- and self-image, depression, anxiety, and poor communication.
Side effects of treatment may also alter sexual functioning; fatigue, nausea, pain, edema and scarring all play a role in how the patient feels and sees him/herself and how the partner views the patient.
Fear of pain may be a major factor in the cessation of sexual activity; the partner may be equally fearful of hurting the patient.

The needs of the couple

Couples may find that in the final stages of illness, emotional connection to the loved one becomes an important part of sexual expression. Verbal communication and physical touching that is non-genital may take the place of previous sexual activity.

Many people note that the cessation of sexual activity is one of the many losses that result from the illness, and this has a negative impact on quality of life.
Some partners may find it difficult to be sexual when they have taken on much of the day-to-day care of the patient and see their role as caregiver rather than lover.
The physical and emotional toll of providing care may be exhausting and may impact on the desire for sexual contact.
In addition, some partners find that as the end nears for the ill partner, they need to begin to distance themselves. Part of this may be to avoid intimate touch. This is not wrong but can make the partner feel guilty and more liable to avoid physical interactions.

Addressing sexual needs

Couples may need to be given permission to touch each other at this stage of the illness and health care providers may need to consciously address the physical and attitudinal barriers that prevent this from happening.

Privacy issues need to be dealt with. This includes encouraging patients to close their door when private time is desired and having all levels of staff respect this. A sign on the door indicating that the patient is not to be disturbed should be enough to prevent staff from walking in and all staff and visitors should abide by this.
Partners should be given explicit permission to lie with the patient in the bed. In an ideal world, double beds could be provided but there are obvious challenges to this in terms of moving beds into and out of rooms, and challenges also for staff who may need to move or turn patients. Kissing, stroking, massaging, and holding the patient is unlikely to cause physical harm and may actually facilitate relaxation and decrease pain.
The partner may also be encouraged to participate in the routine care of the patient. Assisting in bathing and applying body lotion may be a non-threatening way of encouraging touch when there is fear of hurting the patient.

Specific strategies for couples who want to continue their usual sexual activities can be suggested depending on what physical or emotional barriers exist. Giving a patient permission to think about their self as sexual in the face of terminal illness is the first step. Offering the patient/couple the opportunity to discuss sexual concerns or needs validates their feelings and may normalize their experience, which in itself may bring comfort.

More specific strategies for symptoms include the following suggestions.

Timing of analgesia may need to altered to maximize pain relief and avoid sedation when the couple wants to be sexual. Narcotics, however, can interfere with arousal which may be counterproductive.
Fatigue is a common experience in the end stages of cancer and couples/individuals can be encouraged to set realistic goals for what is possible, and to try to use the time of day when they are most rested to be sexual either alone or with their partner.
Using a bronchodilator or inhaler before sexual activity may be helpful for patients who are short of breath. Using additional pillows or wedges will allow the patient to be more upright and make breathing easier.
Couples may find information about alternative positions for sexual activity very useful.
Incontinence or the presence of an indwelling catheter may represent a loss of control and dignity and may be seen as an insurmountable barrier to genital touching.

It is important to emphasize that there is no right or wrong way of being sexual in the face of terminal illness; whatever the couple or individual chooses to do is appropriate and right for them. It is also not uncommon for couples to find that impending death draws them much closer and they are able to express themselves in ways that they had not for many years.

Complete Article HERE!

September 20, 2015September 20, 2015

As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go. — Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!

September 18, 2015September 18, 2015

Caring for someone who is terminally ill

The following information is primarily for our friends in the UK. However, it’s a great checklist for the rest of us too.

It’s important to understand the financial, practical and emotional support available to you and the person you care for. Information on the support that may be available to you or the person you care for is provided below.

Financial support

You or the person you care for may be entitled to some financial support. Some information on this is provided below.

Benefits for the person you care for

The person you care for may be entitled to:

Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
Attendance Allowance, if they are 65 or over and need help with personal care
Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer’s Allowance

As a carer, you may be entitled to receive Carer’s Allowance. You can keep getting this for up to 12 weeks if the person you care for goes into hospital and for up to 4 weeks if they go into a care home (provided certain conditions are met). If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.

Carer’s Allowance

Practical support

There’s lots of support available from different organisations for carers. It’s important that you have enough practical and emotional support in your caring role.

Support from social services

The social services department of your local Trust may provide a range of social care services and equipment for terminally ill people.

Assessments from your local Trust

An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you, as a carer, are entitled to a carer’s assessment.

Emotional support

Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you’re caring for and other family members may also benefit from counseling.

Support groups for carers

There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.

Contact with other carers

Help with caring for someone at home

There are different options to help you care for someone at home.

Medical and nursing care

If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:

visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting)
help with getting the person into and out of bed

Services that are provided by the local Trusts may vary from region to region.

Community nurses and health visitors

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local Trust.

Time out from caring

Employing a professional carer

If you’re caring for someone who needs a lot of care, you may choose to employ a professional carer (or carers) to share the caring role with you.

Employing a professional carer or personal assistant

Alternatives to caring for someone at home

Hospice care

Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.

Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counseling.

Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.

There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

In Northern Ireland, hospice care is provided by:

Hospital care

There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will work to meet any continuing health and social care needs. The person’s needs should be assessed before they return home and a package of care arranged for them.

Support after leaving hospital

Care homes

If the person you care for needs a level of care and support that cannot be provided in their own home, a residential care or nursing home could be the answer. You can find detailed information about care homes in the health and well-being section of nidirect.

Residential care and nursing homes

Helping the person you care for prepare for death

It’s natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don’t want) at the end of their life. The ‘rights and responsibilities’ section of nidirect contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.

Wills and probate

When the person you care for dies

There are things you may need to consider if you care for a terminally ill person.

What to do after a death

When someone dies, there are some things you will need to do straight away, or within the first few days and weeks.

What to do after a death

Bereavement counseling

When someone close to you dies, you may benefit from counseling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.

Cruse Bereavement Care

Benefits and bereavement

If the person you care for dies, Carers Allowance will usually stop after eight weeks. If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:

bereavement payment; a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
widowed parents allowance for people who have dependent children
bereavement allowance for those aged 45 and over when their spouse or civil partner dies

Complete Article HERE!

September 17, 2015

Why use your eventual death as an excuse to try something new?

By Steven W Thrasher

Bucket lists are morbid and moronic. Let’s get rid of them

travel — Bucket lists gained mass appeal after they were featured in a Hollywood film.

Before each one of us dies, let’s wipe the “bucket list” from our collective vocabulary.

I hate the term “the bucket list.” The phrase, a list of things one wants to do in life before one dies or “kicks the bucket”, is the kind of hackneyed, cliche, stupid and insipid term only we Americans can come up with.

Even worse, “the bucket list” has become an excuse for people to couch things they actually desire to try doing as only socially acceptable if framed in the face of their death. It’s as if pleasure, curiosity and fun weren’t reasons enough for action.

If you want to try doing something others might find strange or unorthodox –write a novel, learn to tap dance, engage in a rim job, field dress a deer, climb Everest, go out in drag for a night – why do you need any justification at all? And certainly, why would you need an explanation that is only justifiable in terms of kicking the bucket?

According to the Wall Street Journal, the phrase “bucket list” comes to us from the banal mind of screenwriter Justin Zackham, who developed a list of things he wanted to do before he died. Years later, his “bucket list” became the title of his corny 2007 film starring Jack Nicholson and Morgan Freeman. It’s about two old men with terminal cancer who want to live it up before they die. That, if anyone at all, is who should be using the term “bucket list”. They want to do something with the finite time they know they have left? Fine.

But bucket list has trickled down to everday use by the perfectly healthy, the exceptionally young, and most of all, to douche bags. I realized this at Burning Man last week. Often, when I asked exceptionally boring people what had drawn them to Black Rock City, they’d say: “It was on my bucket list!”

Really? You wanted to schlep out to the desert and face freezing lows, scorching highs and soul crushing techno simply because you’re going to die someday?

If you want to try something, just own that you want to try it. At Burning Man, I was much more drawn to “trysexuals” (“I’ll try anything once”) than to bucket listers. It’s a very different dynamic to say you want to try something because you’re alive, and you’re curious, and you’re open to maybe finding something you might like than it is to justifying something because of your ultimate demise. If you want to try skydiving, skydive. If you want to try going to an orgy, go to that orgy. But be open to the experience beyond it being a mere bucket list check off, with one foot already mentally in your grave. Who knows, you might enjoy yourself.

A bucket list is a way of giving power to others as you nakedly (even if unconsciously) seek their justification for your choices. The bucket list, God help me, is forcing me to validate the one part of Ayn Rand’s objectivist philosophywhich registered with me when I read The Fountainhead years ago. People often place more importance upon the mirror of others’ judgments about them than they do upon their own desires. If you want to do something weird, don’t worry about explaining why you want to slake your desire. You needn’t rationalize your choices as “bucket list worthy” to others who deem them heretical.

There’s a funny dynamic sometimes when I go on a long trip while I’m out of work. When I backpacked through Asia and Europe in 2013, people (usually friends chained to a spouse, children and a mortgage) would sometimes awkwardly say to me: “Well, it will be the trip of a lifetime!” It was a good trip, but just one of many great journeys I’ve taken in my life so far. My adventures might interrupt someone else’s idea of what’s “normal.” But travel isn’t something I do to fulfil my “bucket list”; travel is a way of life for me. I do not rush into a trip thinking: “Good Christ, I could die tomorrow!” I don’t travel in place of the stable job or partner or kids I may or may not ever have. I do it as often as I can because it brings me joy.

Referring to your eventual death as an excuse to do something privileges the future instead of the present. We are all going to die, it is true. I am not abovemorbid thoughts and thinking about death. But to focus on the end of life as a reason to do things, rather than on the fact that you’re alive right now to do them? I cringe when I’ve hear undergraduates in college talk about their bucket list, having already decided they will work for 42 years, lead a certain kind of life, retire – and at prescribed points in that plan, check off fun things before they croak.

“Bucket list” thinking is epitomized for me in the interactive “Before I Die…” art project”, a chalkboard installation with the words “Before I die I want to______” Viewers fill in the blanks, and one turned up at Burning Man this year. If I had my way, we’d stop thinking so much about our eventual annihilation when we strive for fun in our lives … and we’d kick the bucket list to the curb.

Complete Article HERE!