Category: Healing and Helping Professionals

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The Role of the Oncology Nurse in an Effective Palliative Care Family Meeting

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[O]ncology nurses are in the perfect position to implement ideal care for their patients via the use of the family meeting in palliative and end-of-life care. This type of meeting provides an opportunity to coordinate the responsibilities of caregivers and clinicians with patient needs, according to a study by Myra Glajchen, DSW, director of medical education, MJHS Institute for Innovation in Palliative Care, New York, and Anna Goehring, MD, palliative care physician, MJHS Hospice and Palliative Care, New York.1

Oncology nurses usually spend more time with patients than other staff and are able to answer patients’ questions about their medical conditions and discuss end-of-life issues with patients when they are ready to do so. They are also in a good position to evaluate caregivers’ condition and determine how involved caregivers want to be in helping patients make crucial decisions. These decisions are often difficult, yet Ms Glajchen and Dr Goehring write that end-of-life communication skills are not emphasized in the nursing literature.1 They note that the role of the oncology nurse in family meetings is not clear and that there has been little guidance on evaluating and managing caregiver distress.

Family caregivers have their own obligations but often bear heavy, difficult caregiving responsibilities in addition to handling their own personal concerns. Nurses can evaluate the extent to which their caregiving burdens go beyond their skills to cope and provide what their ill family member needs. Oncology nurses also are responsible for assessing the strength of the relationship between patients and their caregivers. A satisfying relationship correlates with a better commitment on the part of the caregiver, although this must be balanced with other activities to avoid caregiving becoming fraught and burdensome.

There must also be a balance with other family members; the researchers stress that a diagnosis of cancer for one family member affects the entire family. Caregivers for patients who are being actively treated for disease are in better physical and emotional health than caregivers for patients receiving palliative and end-of-life care. Oncology nurses should use family meetings to evaluate and structure caregiving situations for patients, caregivers, and their families.

The Meeting

There are a number of reasons for healthcare teams to request a family meeting. Often such meetings are about a decline in a patient’s medical condition or another change in the patient’s prognosis that requires making decisions about new treatments and different options for advance care planning. Meetings may also be called for specific purposes such as completing living wills, do not resuscitate (DNR) and do not intubate (DNI) orders, or to discuss mechanical ventilation, artificial hydration, and nutrition. The nurse’s role is key in these decisions. Oncology nurses are qualified to understand medical information, which they can easily interpret for patients and their families at these meetings. For this reason, it is important for oncology nurses to obtain and review all updated information from the patients’ clinicians prior to the meeting.

With the oncology nurse at the meeting, other clinicians only need to attend if doing serves a specific purpose.1 However, the participation of involved staff from other disciplines concerned with the patient’s care is helpful. Caregivers the healthcare team or patient wants to invite should attend the meeting, although the researchers caution there should be more caregivers than staff present so as not to overwhelm the family at this difficult time. The care team leader should explain why the meeting was called, provide a clear agenda, and should request all attendees to mute their cell phones and pagers during the meeting. A member of the healthcare team should take notes; the investigators suggested using the Family Meeting Report (Figure 1) and documenting the meeting in the electronic medical record.1

A family meeting takes time; at least an hour for preparation, an hour for the actual meeting, and half an hour to an hour for follow-up is required.1 Despite the work-intensive nature of a palliative care family meeting, the oncology nurse can be a true asset, lowering stress and offering information, realistic hope, supportive care, and comfort to patients, caregivers, and other family members.

Complete Article ↪HERE↩!

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For Patients With Heart Failure, Little Guidance as Death Nears

Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.

By GINA KOLATA

[R]icky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

Complete Article ↪HERE↩!

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What is Respite Care?

By SeniorAdvisor.com Staff

[T]he essential meaning of respite care is to support the caregivers via temporary institutional care for their loved ones. Respite care can be provided to a dependent, disabled, or elderly person. It is also known as short-term care and gives you (the caregiver) the opportunity to get a break from your caregiving role while ensuring your loved one stays on track with their normal routine.

Respite care may be provided in short hourly increments, days, or even longer periods of time and also depends on your loved one’s specific needs, your own needs, as well as on the available services in your area and their price points.

Benefits of Respite Care

Respite care enables the caregiver to continue with his or her caring role for a longer period of time and help prevent burnout. It is designed to help families, by giving the caregiver time to slow down and focus on one’s physical and mental health. It may also be given informally by family members, friends, neighbors, or by formal services.

Some studies have shown that respite care helps sustain caregivers’ health and well being, reduces the possibility of neglect and abuse, delays, and avoids out-of-home placements. An additional benefit of respite care is the fact that it helps sustain marriages by reducing the likelihood of divorce.
Types of Respite Care

In-home respite care provides caregiving to the individual at their home.

Attends to the senior’s fundamental self help needs, usually provided by family members.
Assists the family on enabling the senior with development activities to be at home.
Relieves family members from the constant and heavy responsibility of providing care.
Gives appropriate supervision and care to protect the senior’s safety if a family member is not present.

Adult day center respite care provides daily care via licensed facilities and is predominantly used by caregivers who work during the day and need a place for their loved ones to socialize and receive care.

Specialized facility respite care provides highly effective and specialized care (such as for dementia or Alzheimer’s) at a licensed facility.

Emergency respite care provides help and care on an emergency basis. Many home care agencies, help centers, adult day care centers and respite care facilities offer this service.

Therapeutic respite care provides services for seniors and adults, mostly during business hours, but sometimes 24 hours a day. Therapeutic respite care facilities usually care for designated clients only and are not related to the family support centers.

Informal respite care is care given by a family member, relative, friend, or volunteer. It serves to allow the caregiver a brief break to run errands or simply be removed from the current caregiving role. This form of care may also be used during special events.

If you are a primary caregiver, take time to ensure that you are also mentally, emotionally, and physically healthy. Although getting respite care may feel like a daunting task plagued with guilt, it can be a good option to temporarily remove yourself from the situation to regain a renewed sense of well-being for you and your loved one.

Complete Article ↪HERE↩!

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This might be the most egregious tax proposal of them all

By Jennifer Rubin

Business Insider explains one of the Republicans’ most egregious proposed changes in the tax code:

The Republican tax plan repeals an itemized deduction that applies to healthcare expenses. That’s key for families with high medical costs, like those dealing with chronic conditions that require medical devices and other expensive equipment. Right now, those expenses can be deducted from their taxes, but under the Republican tax plan, they wouldn’t be able to.

Under current law, individuals who spend over 10% of their income on medical expenses are allowed to deduct part of those costs from their taxes. The proposed new bill would remove that deduction. According to the Internal Revenue Service, for 2016 taxes, individuals were able to deduct in an itemized way “only the amount of your unreimbursed allowable medical and dental expenses that is more than 10 percent of your adjusted gross income [AGI].”

Who spends more than 10 percent of his or her AGI on medical expenses? Generally people at the end of life in nursing-care facilities, where many expenses are not covered by Medicaid or Medicare. CNBC reports:

“This would be a joke if the consequences weren’t so serious,” said Brad Woodhouse, campaign director of health-care advocacy group Protect Our Care, in a statement. “Republican leaders are determined to raise health-care costs for middle-class families who need it most — in this case people with high medical costs or those paying for long-term care.”

While it’s not a widely used tax deduction — about 5 percent of tax filers claim it — for the old and sick it can be significant.

It tends to be mostly … older people who do not have long-term care insurance, and end up in a nursing home,” said Richard Kaplan, a professor who specializes in tax policy and elder law at the University of Illinois College of Law.

The cost of living in a nursing home can easily run up to tens of thousands of dollars per year and wipe out the savings of elderly residents who are paying out of pocket. The deduction can be an important offset to taxes those Americans would owe on their retirement savings distributions.

“For people who are receiving long-term care and are paying for it themselves, this is going to be a huge deal,” said Kaplan.

Andy Slavitt, former head of the Centers for Medicare and Medicaid Services, tells me, “The medical deduction is one of the most popular and important tax credits, particularly for all of us as we age.” He adds, “It keeps many seniors and families out of bankruptcy when in need of end of life care. Ask anyone with chronically ill kids, parents, or spouses.” These are not only very sick, old people but very sick, old and non-rich people. (“AARP has calculated that about three-quarters of those who claim the medical expense deduction are 50 or older, and more than 70 percent have incomes $75,000 or below. Many of those expenses are for long-term care, which is typically not covered by health insurance. Long-term care can cost thousands or tens of thousands of dollars a year.”)

This move doesn’t recoup much revenue in the grand scheme of things. (“It will cost the government about $10 billion a year in lost tax revenues in 2018 and about $144 billion over the next 10 years.”) So why do it? Well, Republicans have given so many tax breaks to the rich and corporations that they are scrounging for ways to take benefits away from others.

Consider this: The giveaway to rich heirs by removing the estate tax and allowing heirs the “stepped-up basis” adjustment in assets comes to $300 billion. They are literally taking money from nursing home residents so that rich heirs won’t have to pay a dime of inheritance taxes on estates exceeding $11 million (for a couple).

Or think about elimination of the alternative minimum tax, something that costs President Trump and other very rich individuals millions or tens of millions. Repealing it would cost $695.5 billion. Literally, they are taking money from people in nursing homes so that Trump and people like him can pay less in taxes.

There’s only one word to describe this sort of trade-off: obscene.

Complete Article ↪HERE↩!

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Dying a good death—what we need from drugs that are meant to end life

There are a few drugs that can end life, and how we want to die should be considered.

by And

[G]enerally speaking, health care is aimed at relieving pain and suffering. This is also the motivation behind euthanasia – the ending of one’s own life, usually in the case of terminal illness characterised by excruciating pain.

There has been debate in Victoria about the drugs that should be used to end life if euthanasia is legalised. So which medications can we ensure would facilitate the best, medically-supervised death?

Medicine as poison

When it comes to the question of which medicines can, or even are meant to, kill us, the most important thing to remember is the old adage:

“The dose makes the poison.”

This concept is one on which the whole discipline of toxicology and medicines is founded. This is the meaning of the well-known symbol of the snake, wound around the bowl of Hygeia (the Greek goddess of health), representing medicine, which you see in pharmacies and medical centres around the world. The intertwining of poison and is a longstanding concept in the therapeutic use of medicines.

This is a very intricate science, and the reason we conduct clinical research. We need to trial different doses of new drugs to meticulously establish a safe but effective threshold for use.

In more practical terms, this means too much of any medicine can cause harm. Take, for example, the humble paracetamol. When taken following correct guidelines, it is a perfectly safe, effective pain killer used by millions of people worldwide. But taken in excessive quantities, it can cause irreparable liver damage, and if the patient is not given an antidote in a hospital, could lead to death.

What drugs are used in assisted dying?

The group of drugs most commonly used to end life is called the barbiturates. They cause the activity of the brain and nervous system to slow down. These drugs, used medicinally in small doses, can be taken short-term to treat insomnia, or seizures in emergencies. In different doses and administration techniques, these preparations can also be used as anaesthesia, to make us sleep through surgery.

An overdose of barbiturates is fatal. A large dose will effectively make the brain slow down to a point where it stops telling the body to keep the respiratory system working, and breathing ceases.

Both secobarbital capsules and pentobarbital (usually known as the brand name, Nembutal) liquid – (not to be mistaken for epilepsy medication phenobarbital) have been used either alone or in combination for physician-assisted suicide or euthanasia. They are also used in injectable forms for animal euthanasia.

These two products are tried and tested, have the advantage of years of use with the benefit of knowing the exact dose range needed, and with few adverse effects reported (such as unexpected pain, drawn-out death or failed death).

Their safety and efficacy in inducing a peaceful, swift and uneventful death has been proven around the world. They are the preferred drugs in the Netherlands, Belgium, Switzerland and some USA states where euthanasia is legal.

Other options exist, whether in combination or alone, but have limited evidence of use in euthanasia. Some drugs that cause excessive muscle relaxation and respiratory distress can end life, as can some pain killers commonly used in palliative care.

Drugs can also be used that fatally lower , cause heart attack, or block messages from the brain to the muscles, causing paralysis.

While all of these drugs are legally available in Australia, they could cause a long, protracted , with many more side effects that could cause distress and suffering at the end of life. Nembutal and its relatives are less likely to do so, with greater evidence from international practices than any other drugs that can end life.

The ‘best’ death

In Australia, Nembutal and secobarbital can be used for animals, but are illegal for human use. This makes implementation of the newly proposed euthanasia law in Victoria slightly more difficult. The proposed legislation does not seek to legalise the use of Nembutal and its relatives – but suggests a “drug cocktail” be concocted by a compounding pharmacist.

The Victorian government has reportedly approached Monash University’s pharmacy department to research the kind of pill that could be developed if the legislation passes. Therefore, no final description of this product has been released.

Some have suggested the mixture will be in powder form made with to induce a coma and eventually cause respiratory arrest. It may also use sedatives and muscle relaxants, a drug to slow down the heart, and an anti-epileptic to prevent seizure and induce relaxation of muscles. The constituents and doses are yet to be determined.

It’s difficult at this early stage to predict how this concoction would work and whether it would be easier or safer to use than drugs already tried and tested. This proposed product would need to be tested and results compared, as all are.

What is needed is a or a mixture of drugs that produce a painless, relatively quick and peaceful passing. We do not wish to see further suffering in the form of seizures, prolonged distress and pain. If no solution is certain, it would be wise to fall back on simply legalising what is already tried and tested.

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Learn to Cope With Death as a Future Physician

Prospective medical school students can use volunteer experiences to learn how to care compassionately for dying patients.

As a prospective medical student, remember to take the time to grieve.

By Kathleen Franco, M.D.,

[M]ost prospective medical school students set out to become physicians because they want to heal the sick, often forgetting that patients, young and old, sometimes die.

Death is a very real – and natural – part of medicine that you will not only face but also will need to learn how to handle. Before you start medical school, consider how you might care compassionately for a dying patient and how you will cope with the loss.

Some physicians – although very few in my experience – look at death as defeat and cope by emotionally running away from dying patients. For example, in the inpatient setting, they may visit the patient less often or avoid contact altogether.

In the outpatient setting, they might recommend a longer time between visits or, rather than suggest a follow-up appointment, wait for the patient to request one. This coping strategy makes patients feel abandoned.

Other physicians – again, very few – cope by behaving callously or indifferently. Subconsciously, they may be trying to avoid emotional involvement, but their behavior leaves their patients and families feeling hurt and disappointed.

Most physicians find healthy strategies to support their dying patients. These same strategies help physicians keep themselves emotionally healthy, too.

As a future medical student, it’s vital that you prepare yourself to compassionately face death and dying and the complex emotions that follow. One way to do this is by volunteering in a hospice facility or nursing home and honing these six skills.

1. Be authentic: As a volunteer, introduce yourself and express your hope that someday you wish to become a physician. Let patients know you are there to learn more about their experiences.

Ask patients about how they grew up or what they were thinking about at your age. Ask about their work or career – a generally safe place emotionally – and where they have lived or about their family.

Be sure to make eye contact and watch your body language. You’ll use these skills when you’re a physician to develop trust and open communication with patients.

2. Listen with purpose: Practice your active listening skills so that on future visits you can ask patients more about previous conversations.

By bringing up something from a past visit, you will show that you remembered what they told you and that they matter to you as a person. Active listening is another skill you will use throughout your medical career.

3. Allow patients to talk about death: Everyone faces death differently; some people want to talk about it, while others prefer to reflect on their life and accomplishments.

Whether now as a volunteer or later as a future physician, let patients talk about death as they need to. Don’t shut down the conversation by saying, “Everything will be all right.” Instead, ask them to tell you more. Listen to all they have to say, whether it’s about their health, fears or fond memories.

4. Visit or connect consistently: A good physician builds rapport over time, and you can develop this skill through your volunteer position. During extended time between visits, call or drop the patient a note.

This is a good habit to develop so that when you are a physician, your patients – particularly those who are dying – will feel supported. At the end of each visit, thank the patient. You won’t know at the time if it will be your last opportunity to visit, so treasure each interaction.

5. Seek support: Myriad scholarly articles and books are available to help physicians – and all people – accept that death is an inevitable part of life and that grieving is normal and encouraged. For instance, attending funerals help some people grieve, while others seek solace from support groups or counseling.

Social workers also deal with death and dying regularly and can give you advice about how they cope and prevent burnout. Make the social work team part of your professional network. Their support and advice will help you cope as a physician, especially when you lose a patient who had a particular influence on you.

6. Allow yourself to grieve: Over the course of your relationships with patients who are dying, you will learn a great deal about your capacity to care for others. It will likely hurt when patients die.

Remember that it’s important to grieve, and keep in mind that everyone grieves differently. Give yourself the room to process your emotions and to discover the coping mechanism that’s right for you.

Over time, you will gain some insight about your ability to cope. Physicians often cope by speaking confidentially with colleagues and expressing sadness and other emotions in a journal. After omitting a patient’s protected health information, some physicians publish their writings to help themselves and others who are grieving.

Many medical schools also teach students to reflect about their emotions and write them down. Writing and seeing the words help the healing process.

As a future medical student, embrace the opportunity to get to know someone who is dying. It will allow you to reflect on how you may feel when a future patient dies and learn to create a meaningful bond with the people you touch now and in the future.

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De-Medicalizing Death

By Jessica Nutik Zitter

[T]here’s been an unexpected, and excellent, consequence to California’s new medical aid-in-dying law. For many terminally ill patients, immersion in the process of securing lethal drugs ultimately renders them unnecessary. How did this come about?

Passed by the California legislature in late 2015, the End of Life Option Act allows physicians to prescribe a lethal concoction of drugs to some patients with terminal illnesses who meet certain criteria. The law, commonly described as providing “medical aid in dying,” took effect on June 9, 2016. It stipulates only that the requesting patient be considered terminal (less than six months away from death), possess full decision-making capacity, and be physically able to self-administer the life-limiting drugs. Although the physician is obligated by law to inform the patient of alternative care options, such as psychological counseling or symptom management with palliative care services, there is no direct requirement that the physician arrange or provide them. In its barest form, the option can serve as a dispensary for life-ending medications.

California’s medical community was taken by surprise by the rapid passing of the law in late 2015. It came on the heels of the dramatic case of Brittany Maynard, a young woman with terminal brain cancer who elected to move from California to Oregon to access medical aid in dying under that state’s Death with Dignity Act. Hospital systems and physicians in California suddenly found themselves with an urgent need to rapidly formulate policies around this new right of patients. Some, such as the Catholic Health Systems, opted out on religious grounds. Others scrambled to put basic policies in place for patients who met inclusion criteria. And some institutions decided to put significant time and resources into supporting this new legal reality in the most comprehensive way possible.

One standout example is the University of California, Los Angeles (UCLA) Health Centers. After literally thousands of hours of discussion, the working group determined that the intake process for patients requesting medical aid in dying should be conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians. Dr. Neil Wenger, director of the UCLA Health Ethics Center, led the effort to create processes and infrastructure to respond to this law. “We wanted to be able to offer a service that doctors tend to gloss over,” he said, when asked why they chose to lead with talk therapy. The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

The intake questions explored goals of care, quality of life, and patients’ emotions around their impending deaths: Were they ready? What scared them? What made them anxious? Did they feel their lives were complete? What did they feel makes life meaningful? What decrements in quality of life are too great? What haven’t they said and to whom? Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

Ours is a culture that does not talk about death, even when it should be impossible to ignore. Despite the fact that 89 percent of people think that it is a doctor’s responsibility to discuss end-of-life care with their patients, in reality, only 17 percent of patients report having had such a conversation, according to a 2015 survey from the Henry J. Kaiser Family Foundation. As a doctor who practices both critical care and palliative care medicine, I have presided over thousands of deaths. Most of my patients have suffered with chronic illnesses for years: metastatic cancers, failing lungs, and progressive debilitation from dementia. And yet almost none of them have discussed their own death with their doctors, or even their families. Most have no idea that they are actually dying. In this culture that operates on a fantasy of immortality, with unrealistic promises made by television shows and advertisements, doctors see themselves as failures if they are unable to cure their patients. We physicians are trained to lead patients into battle after battle, into the next procedure or intervention, banking always on that magic pill or miracle cure.

This broad cultural unwillingness to acknowledge death results in a phenomenon I call the “End-of-Life Conveyor Belt,” where high-tech treatments are automatically attached to bodies as they progress through the stages of dying. As the baby boomers age and our treatment options blossom, more are being exposed to the suffering brought about by these protocols. The tremendous anxiety we see over loss of control is understandable. It is no wonder that people in many states have asked for, and finally won, the right to take back that control with a pill.

The effort by UCLA Health seems to be working. Placing highly trained psychologists and clinical social workers in the critical role of “first responder” to a patient’s request to hasten death has rendered many of these requests obsolete. In choosing this approach, UCLA is effectively “de-medicalizing” the experience of dying by prioritizing the need for deep reflection. In this way, the program provides patients with an option that doctors are not primarily trained for.

Patients requesting support to hasten their deaths are only a small subset of the population of the dying. They are in some ways canaries in a coal mine, their request for medical aid in dying is alerting us to the unmet needs of the wider population of dying patients. And what I am seeing is that our new legal responsibility to steward these patients responsibly through this rocky terrain will build practices and skills that will help all of those at the end of life.

Where goes California, thus goes the nation. California was the fourth state to legalize medical aid in dying and has since been followed by two more. And UCLA’s approach, with trained psychologists guiding patients through this tricky terrain, shows us the way. Let’s take advantage of this wave to take better care of all our seriously ill patients. And let’s make sure we give patients what they really need and hope that lethal drugs are always the last tool in the toolbox.

Complete Article HERE!