‘Quick and painless death’: easier said than done

By

The central goal of right-to-die organisations has not changed much over the past 150 years. In 1872 a British writer, Samuel D. Williams, wrote a book advocating the use of the novel anaesthetic chloroform to give patients “a quick and painless death”. In 1931 the British eugenicist Dr Killick Millard proposed legalisation of euthanasia “to substitute for the slow and painful death a quick and painless one”.

Now that legalisation has arrived, however, doctors have realised that a Q&P death is easier said than done.

Writing in a recent issue of The Spectator (UK) Dr Joel Zivot, a Georgia physician, expresses his doubts about whether lethal medications are the way forward. He studied the autopsy reports of more than 200 prisoners executed with lethal injections and found that many may have died in great pain.

“The death penalty is not the same as assisted dying, of course. Executions are meant to be punishment; euthanasia is about relief from suffering. Yet for both euthanasia and executions, paralytic drugs are used. These drugs, given in high enough doses, mean that a patient cannot move a muscle, cannot express any outward or visible sign of pain. But that doesn’t mean that he or she is free from suffering.”

Dr Zivot believes that pentobarbital, which, it seems, is used in Oregon in 4 out of 5 assisted suicides, caused pulmonary oedema – the lungs fill with liquid secretions and the person can die in agony. “Advocates of assisted dying owe a duty to the public to be truthful about the details of killing and dying. People who want to die deserve to know that they may end up drowning, not just falling asleep,” he writes.

Nor is death necessarily quick.

In Oregon, where statistics are gathered about the mode of death, the median time to death throughout the 23 years of the Act is 30 minutes but the maximum time is 4 days and 8 hours. The median time for people to fall unconscious is 5 minutes, the maximum is 6 hours.

At least in the United States, doctors who participate in assisted suicides are aware of these issues. Dr Lonny Shavelson, a California physician who specialises in this novel field, has helped to organise the American Clinicians Academy on Medical Aid in Dying. This provides a forum for doctors to establish a best-practice for helping people to die.

It turns out that the very diseases from which the patients suffer can make the drugs less effective. Dr Shavelson spoke with Medical Xpress last year about some of the difficulties:

“Shavelson and [his colleague retired anesthesiologist Dr Carol] Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.

“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.”

Complete Article HERE!

‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

By

Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!

Home-Based Palliative Care Can Improve Quality of Life

Relieving a patient’s symptoms and providing support to caregivers is the goal. It’s a beneficial program, but cost is a factor.

By Lola Butcher

Cleve Hart of Pollock Pines, California was about to be discharged from the hospital when a social worker suggested that he might benefit from home-based palliative care. At the time, he and his wife, Toni, were unfamiliar with palliative care — an array of supportive services for people with serious illnesses — but they have benefitted greatly from those services for the past three years.

Cleve has been diagnosed with dementia, kidney problems and cancer. A nurse comes to their home once a month to check his vital signs.

“And she makes suggestions — like, if he’s not eating well, she suggests things that maybe would increase his appetite,” Toni says. “They just try to make him as comfortable as possible.”

Meanwhile, Magen Fregoso, a social worker at Snowline Supportive Care in nearby Sacramento, California, has directed the Harts to various resources for financial and other support — for example, a place to get adult diapers at no cost — that make their lives easier.

“They might sound like little things, but they’re big things to us, you know?” Toni says.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain.”

For her, just knowing that the palliative care team is available for immediate advice is a huge comfort.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain,” Toni says. “And they right away tell me, ‘Yes, you should take him to the hospital,’ or ‘No, give it a couple hours and see how it goes.’ They just counsel with us and that’s a great relief for me to know what to do.”

That’s the goal of home-based palliative care, said Susan Enguídanos, associate professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California. By relieving a patient’s symptoms — pain, shortness of breath, constipation, anxiety and others — and supporting their needs, whether that’s meal preparation or grooming or emergency advice, the home-based team makes life better.

Over the past two decades, her research has documented that patients who receive home-based palliative care services have fewer emergency department visits, hospital inpatient days, skilled nursing stays and physician visits than similar patients who do not receive that extra support.

The total cost of their medical care, including the palliative care services, is significantly less; patients report greater satisfaction with their care; and they are more likely to die at home, as per their wishes, than patients in a comparison group.

Nonetheless, home-based palliative care is still not available for most U.S. patients. In an interview with Next Avenue, Enguídanos explained why.

Next Avenue: What is home-based palliative care?

Susan Enguídanos: The vast majority of palliative care is provided in the hospital. That typically happens when a patient has a very serious condition and needs help deciding what kind of care they want or help with pain management. They would only have access to that palliative care team until they are discharged from the hospital. At that point, if they’re lucky, they might be referred to an outpatient palliative care clinic.

Home-based palliative care is really the only place for continued access to palliative care unless you have enrolled in hospice because your doctor believes you are in the last six months of life.

What is the difference between hospice and home-based palliative care?

Both hospice and home-based palliative care provide symptom management, psychosocial support, pain control, education and caregiver support to meet a patient’s medical, social and spiritual needs.

But they are completely different in this way: Hospice is for people who are actively dying and who do not want to pursue aggressive treatment for their medical problems. Home-based palliative care is for people struggling with a serious illness but who are not actively dying and, in fact, may be undergoing treatment with the goal of recovery.

So every seriously ill person is eligible for home-based palliative care?

Unfortunately, that’s not the case. The biggest problem is that Medicare does not pay for home-based palliative care. Because there is no consistent funding, there is no standardization as to what these programs look like or who can receive services.

“The first thing is to check with your insurance company. Just say: ‘I am interested in home-based palliative care and can you help me?'”

California is one of the best states in providing home-based palliative care. The big Kaiser Permanente health system here serves a huge number of patients through its program. They know the evidence shows that it is good for patients and it’s also good for their bottom line.

Outside of that, things are a little iffy, even in California. Blue Shield of California (one of the biggest private insurers in the state) started paying for home-based palliative care about four years ago. Individuals covered by a Medicaid managed care plan can access the services, and some commercial insurers or medical groups may offer it, but each program looks a little different.

Home-based palliative care is also available in other states, of course, but there’s a lot of variation depending on who is providing the services and who is paying for it.

How can a patient or caregiver find out if home-based palliative care is available?

The first thing is to check with your insurance company. Just say: “I am interested in home-based palliative care and can you help me?” The second thing is to ask your doctor. But you should be aware that some physicians have no idea what palliative care is, let alone home-based palliative care. So they might not know how to refer a patient to a program.

If those two steps don’t lead to anything, look online to see if there are local providers of home-based palliative care in your community. Here in California, some programs have a cash-pay option for people whose insurance does not cover home-based palliative care. And there are some agencies that have a charity aspect that supports some patients.

Complete Article HERE!

The App That Prepares You for Death

Through asking the hard questions, this app will coach you through end-of-life plans.

By Steph Panecasio

When someone you love passes away, it’s impossibly hard to prioritize all the logistics. You’re facing unimaginable stress and grief all at once, so when it comes time to negotiate funeral planning, insurance records, legal and financial documents, and more, it can be overwhelming.

So it’s important to get all of this sorted before you’re reeling from loss.

Enter Bereev, a death preparation app that’s beginning to make waves in Australia. Its purpose is to destigmatize the conversation surrounding end of life, turning death from a taboo topic to a dinner conversation. With planning and preparation, according to Bereev, we can ease the lives of the people we leave behind.

To spread the word, founder Izumi Inoue launched Death Convo Game, a campaign asking 31 questions about death over the 31 days of May.

Screenshot of an app, with an orange box asking you to list the Top 3 things on your bucket list.
The app asks you to start the conversation with your loved ones.

“Initially it was all about getting folks to get started on their preparations, mainly getting their affairs, instructions, documents, and messages in order so that the people they leave behind will get the chance to grieve, instead of running around dealing with the death admin which can be very traumatising,” said Inoue.

“We sat down as a team and asked ourselves, what are the biggest/most burning questions about death that we ourselves as individuals want to talk about? With that, we started off with close to a hundred questions, which we then put on a vote amongst a small group of our existing users and picked the top 31.”

The game, and the wider app, ask you to challenge your preconceptions about death. Each day, you’re prompted with a new question to open up a dialogue with your loved ones.

“How would you like to be remembered?”

“Who would you like to be surrounded by towards the end?”

“When do you feel most alive?”

For every day that users participate in the Death Convo Game, it gives them a greater chance to score free access to the Bereev app, where they can prepare their plans.

From there, the app coaches you through the difficult process of organizing your end of life plans, no matter what you might choose to do. It also has a focus on inclusivity, with options for Muslim users who wish to upload their Wasiat and Hibah to their preparation plans.

“We started off in Malaysia back in 2018 and Malaysia is a melting pot of cultures, ethnicities and religions,” said Inoue. “It taught us a lot in terms of navigating a spectrum of beliefs, and like it or not, death and religion can be very intertwined. Because of that, I think that every death tech startup should take their communities’ beliefs into account and weave that into their user experience.”

Death tech is a hugely promising arena, with everything from alternative cremations and funeral tech through to video games dealing with the concept of end-of-life care. It’s little wonder that apps like Bereev have such an invested audience, when all of us are guaranteed to face death eventually. 

It stems from the concept of death positivity, which is all about destigmatizing the conversation. Death positivity doesn’t mean you’re looking forward to death — it just means that you accept what comes and that you learn to talk about it in a healthy way.

That’s why Inoue and the team behind Bereev believe it’s even more important to deal with the paperwork before it comes time.

“I’ve lost both of my grandparents and have seen with my own eyes the toll an unprepared death takes on the people left behind,” said Inoue.

“It causes friction, additional trauma and it tears families apart. No one in their right mind would want to inflict that one their already grieving loved ones. … I have a saying that I stick by: When I go to heaven, the last thing I want is to put my loved ones through hell.”

Complete Article HERE!