Conscious Living – Page 190 – The Amateur's Guide To Death & Dying

October 7, 2015

Inmates Help Other Prisoners Face Death in Hospice Program

By Andrew Welsh-huggins

Inmate Scott Abram sings to a fellow inmate who is dying and is spending his last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. (AP Photo/Andrew Welsh-Huggins)

As late-morning sun streams through narrow prison windows, convicted killer Scott Abram stands beside a fellow inmate, speaks quietly to him and starts singing “Amazing Grace.” The prisoner appears to smile, but it’s difficult to gauge his response. He is dying.

He passes away two days later in early September.

Abram is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. Behind bars since the early 1990s for murder, he has gotten used to spending time with male prison friends as they die in rooms 205 or 206 on the second floor of the state’s prison for chronically ill inmates.

“We’re all human, and we make mistakes,” said Abram, sentenced to 15 years to life. “There are some that make bigger mistakes, like me. I make a lot of mistakes each day.”

Abram, 48, is a Stephen Minister, a type of lay counselor common in churches around the country but rarer inside prison walls. He is one of 15 male and female inmates trained in the program at Franklin Medical Center, a small prison just south of downtown Columbus that houses some of the state’s sickest inmates, many of whom die there.

Abram’s hospice work is just part of his Stephen Minister counseling. He and others also work with troubled inmates, perhaps helping them write a letter or make a call.

In Ohio and nationally, the inmate population is graying. Ohio had 8,558 inmates over 50 this year, nearly double the number in 2001. Other states, including Louisiana, Iowa and California, have similar prison programs.

Prisoner Sheila Belknap says her participation also makes her think about her own mistakes. Belknap, 42, plans to continue hospice work after she is released next year from a four-year term for theft charges. She calls her work with the dying a privilege.

A prison official points out a handmade quilt featuring the names of inmates who have died in prison hospice at the Franklin Medical Center, on Friday, Sept. 11, 2015 in Columbus, Ohio. Inmates trained in a counseling program called Stephen Ministries help fellow prisoners in their last days. (AP Photo/Andrew Welsh-Huggins)

“It’s just the satisfaction I get just from being there at the time of need,” she said. “No one wants to pass alone.”

Nos. 205 and 206 — there is also a room in another unit for female patients — resemble ordinary hospital rooms. Hanging wall quilts made by volunteers soften the institutional feel. Abram and Belknap are often joined by members of a Columbus choir that sings to hospice patients around central Ohio.

The Department of Rehabilitation and Correction hopes to expand the number of Stephen Ministers at other prisons, though hospice care would remain in the Columbus facility.

On average, an Ohio inmate dies of natural causes every three and a half days, not unexpected with a statewide prisoner population of 50,000, the size of a small city.

The national Stephen Ministry office in St. Louis is unaware of other state prisons with inmates trained in their counseling program.

Louisiana began an inmate hospice program in 1997 at the state penitentiary in Angola and developed a 40-hour training program for offenders, who volunteer for four-hour shifts with dying prisoners. California says it established the nation’s first inmate hospice at the California Medical Facility in Vacaville in 1993.

Inmate Scott Abram, holding a training dog, Ziva, talks about his work counseling fellow inmates including some who are dying and spending their last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, also trains puppies that may end up as pilot dogs. (AP Photo/Andrew Welsh-Huggins)

The program at the Iowa State Penitentiary in Fort Madison, Iowa, was the subject of “Prison Terminal: The Last Days of Private Jack Hall,” a documentary by filmmaker Edgar Barens that received a 2014 Academy Award nomination.

“It not only helps the prisoner who’s dying of a terminal illness, but it’s so redemptive for prisoners who go through the process of becoming hospice workers,” said Barens, a visiting media specialist at the University of Illinois at Chicago. “It’s tenfold payback when a prison does this.”

Complete Article HERE!

October 5, 2015October 5, 2015

California Governor Signs Right-to-Die Bill

By Josh Sanburn

California becomes the fifth state to allow the controversial practice

California Gov. Jerry Brown signed legislation Monday allowing doctors to prescribe life-ending medication to dying patients, making the state the fifth to legalize the practice and the first since the death of Brittany Maynard, whose decision to leave the state to end her life last year lent new urgency to the right-to-die movement.

Brown, a Catholic who at one point considered joining the priesthood, said in a statement that the religious objections to the bill were not enough to convince him to veto it.

“In the end, I was left to reflect on what I would want in the face of my own death,” Brown said in a statement explaining his decision. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill.”

Right-to-die supporters have been working to legalize the practice in California for almost two decades. The movement gained significant momentum last year when Brittany Maynard, a 29-year-old newlywed, was diagnosed with terminal brain cancer and left California for Oregon to take advantage of the state’s Death With Dignity law, which went into effect in 1997. Since Maynard’s death, half of all U.S. states have introduced aid-in-dying legislation.

“This is the biggest victory for the death-with-dignity movement since Oregon passed the nation’s first law two decades ago,” said Barbara Coombs Lee, president of Compassion & Choices, a right-to-die advocacy group, in a statement.

Polls showed that three-fourths of Californians supported the measure, but legislators routinely ran into opposition from disability rights advocates who say the practice can open the door to abuses of the elderly and disabled, as well as the Catholic Church, which says only God should decide when people should die.

The law allows doctors to prescribe life-ending medication to patients who have been given six months or less to live. It requires two doctors to consent to the prescription as well as written requests from the patient for the medication. California joins Oregon, Washington, Vermont and Montana, which also allow the practice.

Complete Article HERE!

October 2, 2015

I’m not as brave as my father, who died in misery

tony lopez — When Steve Lopez’s father, Tony, died he was so ill he couldn’t care for himself and death was a release.

By Steve Lopez

Dear Gov. Brown:

Three years ago, my father died in a fairly typical manner. His heart and his body had given out, he could barely move, he couldn’t feed himself and he was in diapers.

He was in a bit of pain, but the physical suffering was nothing compared to the emotional and psychological side of things. His life was gone and there was no joy in a day. He had no privacy and he hated having to be cared for as he lay in bed helplessly, a witness to his own lingering death, which finally arrived as a friend might, delivering the gift of mercy.

Maybe I’m not as brave as my father, but I knew then that I do not want to die that way and wouldn’t want my loved ones to experience the misery of watching me slowly dissolve.

In some circumstances, death may be the best remaining friend and it is reasonable and moral to accelerate the dying process.– Dan Maguire, professor, Marquette University

So what will I do? I don’t know. I wouldn’t be one to put a gun to my head, as some do. Maybe I’d stop eating and drinking water, but that can be a pretty miserable way to go too.

Gov. Brown, I don’t know if you read about this in my column, but I died once. Just after a knee operation, I went into cardiac arrest and flat-lined. That wouldn’t be a bad way to go, actually. No long, drawn-out affair. No messy stuff. But I was resuscitated, and I’m alive and well for the time being, and I’m asking you to give dying Californians the right to depart on their own terms.

No one seems to know what you will do with the End of Life Option Act that’s in your hands and would give us the same freedom people have in Oregon, Washington and elsewhere.

I know that our democracy is based on a separation of church and state, and that leaders such as you try not to let the tenets of their faith assert undue influence on secular decisions. I know too, however, that our values are usually set early and that religious beliefs are often core to who we are.

So it seems reasonable to note that the Catholic Church opposes what critics call assisted suicide and supporters call aid in dying, yet polls suggest most Catholics — as well as most Californians — want the option of going through a series of steps to get a life-ending prescription from a physician.

I know, governor, that you got a little farther than I did in the Catholic Church. You were a seminarian and I topped out at altar boy.

I don’t know if you still identify as a Catholic, but to me, any religion is about a search for meaning and we all know you’re a thoughtful — even spiritual — man who reflects, quotes Scripture and works from a set of basic moral principles.

So I wanted to share some conversations I’ve had with religious people who came to support aid in dying in the context of their experience and training.

“As a Christian I believe God is love,” the Rev. Ignacio Castuera once told me. “…And the God of love would not want any of God’s creatures to suffer undignified situations, especially at the end of life.”

Castuera grew up Catholic and is now a United Methodist Minister in Pomona. He told me about his ministry in West Hollywood during the AIDS epidemic, and he spoke of the honor of being with those who found a way to purchase life-ending medications and face death bravely with loved ones present.

“Death,” Castuera said, “is not the final stage for humans.” It is, in his mind, a deliverance to God.

The Rev. Sergio Camacho, a Methodist minister in Montclair, shares that view.

“Over the years, I’ve seen so many people dying, from brain tumors and other diseases,” he said. “It’s unbelievable how they suffer.… Before they go, they curse their families, they curse themselves, they curse God. It’s horrible, and God doesn’t want that. He wants us to go in peace. We need to think about this with merciful hearts.”

Dr. Robert Olvera, a Catholic physician and former altar boy who grew up in East Los Angeles, has supported aid in dying since watching his daughter die, at 24, from the leukemia she lived with for 17 years. She was blinded by her disease, he said, painkillers offered no relief and she suffered greatly.

“She was basically living in a black hole,” he said. “She had no quality of life.”

She was wasting away, her face was sunken, she did not want to be seen by anyone and she was in that state for the final three months of a life that ended last year.

“She begged me to give her some sleeping pills,” said Olvera, who couldn’t answer that request, knowing he could be criminally charged and lose his license to practice medicine.

Doctors can and do offer palliative sedation, but Olvera believes they should also have the right to grant a terminal patient’s wish to die at the time of their choosing, provided they are of sound mind and have satisfied the safeguards against abuse or coercion that are written into the end-of-life legislation.

I asked Olvera how he would respond to the argument that the timing of death is not something patients and doctors should decide; that should be left in God’s hands.

Doctors, he said, can unplug ventilators and they can answer a patient’s wish to be taken off dialysis. They can recognize that modern medicine has advanced to the point where people can be kept alive almost indefinitely, but all of us must ask whether, in some cases, we are extending life or prolonging death.

As both a physician and a Catholic, Olvera said, he believes no one should have to experience what his daughter did.

I understand that your education was Jesuit, Gov. Brown.

Well, Dan Maguire studied in Rome, became a Jesuit priest and now teaches moral theology at Marquette University, a Jesuit school. Here’s what he told me:

“For almost 50 years a number of Catholic theologians have taught that for the terminally ill, ending life may, at times, be the best that life offers. In some circumstances, death may be the best remaining friend and it is reasonable and moral to accelerate the dying process.”

According to Scripture, Maguire told me, we are made in the image and likeness of God, and it is our God-given right to decide for ourselves on matters such as aid in dying.

“Thomas Aquinas says with great wisdom that human actions are good or bad depending on the circumstances,” Maguire said. “In certain cases, you could say that life is good, and always to be served as best you can, but there are times when the ending of life is the best that life offers, and moral beings can make that decision for themselves…. That’s what human freedom means.”

It’s true, Gov. Brown, that some fear the life-ending option will be abused, and that those who are disabled or in a state of depression will choose inappropriately or be manipulated by relatives who stand to benefit financially.

It’s true, as well, that we need to be mindful of the potentially dangerous intersection of end-of-life options and cost-cutting by health insurance companies that have a financial disincentive in costly end-of-life procedures going on for long.

But I believe the legislation before you offers safeguards against abuses.

I don’t know if my father — who refused a feeding tube before his life came to a close — would have taken advantage of the End of Life Option Act, had it been available at the time.

I’m certain many people — probably most people — would want no part of it. That’s their choice and they should be entitled to the finest palliative care.

But I know that since writing about his death, I have heard from hundreds of Californians who would take a small measure of comfort in knowing that if they so choose, they can avoid physical or emotional suffering as the inevitable end nears. They believe that, as Dan Maguire put it, there comes a time when death is a friend.

I stand with them.

Complete Article HERE!

October 1, 2015September 30, 2015

Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

By: Romayne Gallagher MD, CCFP

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!