Can Psychedelics Help Make Dying Easier?

“I need to be in a space where I am not hopeless,” says one terminal cancer patient who is suing the Justice Department and the DEA for her right to use psilocybin

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Erinn Baldeschwiler had already been having a rough go of it. A mother of two teens, she was going through a divorce, moving out of her house, and splitting from her business partner all as the severity of the Covid-19 pandemic was becoming a reality. Amid it all, she was diagnosed with stage four, triple-negative metastatic breast cancer. The doctors told her that even with chemotherapy every week — something which she knew would severely impact her quality of life — and immunotherapy every two weeks, she likely had about two years to live.

“It was devastating,” says Baldeschwiler, 49. “I thought, what if I’m not going to be here for my kids? A dear friend passed very suddenly, unexpectedly from cancer a few years back and I just know the pain that it leaves behind. It was really, really heavy.”

Now Baldeschwiler, along with Michal Bloom, another cancer patient diagnosed with stage 3 ovarian cancer in 2017, their palliative care physician, Dr. Sunil Aggarwal, and his clinic, AIMS Institute, are suing the Department of Justice and the Drug Enforcement Administration. Baldeschwiler and Bloom want to try psilocybin, the psychoactive component in psychedelic mushrooms, in a therapeutic context for what’s sometimes called “end-of-life distress,” depression, anxiety, and other mental health challenges that can come along with a terminal diagnosis. 

Kathryn Tucker, one of seven attorneys on the case, says Baldeschwiler and Bloom have the right to access psilocybin under Washington state’s Right to Try law, a law which permits patients with a terminal illness to access drugs that are currently being researched, but not yet approved. The federal government, she says, is wrongfully interfering with that right.

According to Tucker, who has devoted much of her career to helping pass and reform legislation meant to ease the suffering of those at the end of their lives, states are the primary authority for the regulation of medicine. And yet, in January, Tucker says, when she wrote to the Drug Enforcement Administration, on behalf of  Aggarwal, Baldeschwiler, and Bloom, asking them how they should go about accessing psilocybin, the administration wrote back saying they couldn’t because psilocybin is a Schedule I drug on the Controlled Substances Act, the most restrictive category defined as drugs with “no medical use” and a “high potential for abuse.” (Typically, physicians with terminal patients would go straight to a manufacturer to get access to a drug under a state’s Right to Try law, but they needed to write to the Drug Enforcement Administration about the process for access since psilocybin is federally illegal.)

In addition to Washington state, 40 states have Right to Try laws, although they’re all worded slightly differently. (Some use language like “terminally ill” while others say “life threatening,” which could change who qualifies.) Overlaid on top of these state Right to Try laws is a federal Right to Try law, which President Trump signed in 2018. In this case, Tucker and the fellow attorneys are primarily focused on patients’ rights under Washington’s Right to Try law, but are using the federal Right to Try law to bolster their argument.

Both the Washington law and the federal law state that terminal patients can access drugs that are not yet approved by the Food and Drug Administration so long as they’ve successfully made it through the first phase of an FDA-approved clinical trial and are currently being investigated. Psilocybin is currently in the final phase of research before FDA approval, and has shown so much promise for treatment-resistant depression and major depressive disorder that it’s been granted “breakthrough therapy” status by the FDA.

“The DEA just did not know about or did not understand Right to Try and this lawsuit is something of an educational vehicle,” Tucker says. Yes, she says, psilocybin is on the Controlled Substances Act, but in the hierarchy of legislation, The Federal Food, Drug, and Cosmetic Act, which Right to Try falls under, trumps the Controlled Substances Act. Tucker says DEA officials just don’t understand that or are behaving as though they don’t. (The Department of Justice declined to comment for this story.)

“I don’t want my diagnosis to be upsetting and dark and hopeless for my kids,” says Baldeschwiler. “So I need to be in a space where I am not hopeless and there is peace. I know for certain if I’m negative and ‘woe is me,’ and desperate and have feelings of like ‘I just want to check out,’ that’s going to make it a hundred times worse.”

Baldeschwiler first got the idea to do psychedelic-assisted psychotherapy from Aggarwal, who she’d found after looking around for more holistic treatment plans in the Seattle, Washington area. Aggarwal discovered what he says is the extraordinary potential of psilocybin to help cancer patients when working with the psilocybin research group at New York University.

Researchers, going back to the late 1950s, found psychedelics such as psilocybin and LSD showed promise for end-of-life distress as well as a host of other mental health conditions, from alcoholism to trauma. Much of this research, however, is not considered valid by the Food and Drug Administration because it did not follow their current protocols.

After Richard Nixon signed the Controlled Substances Act into law in 1970, there was essentially a decades-long ban on psychedelic research. It was a landmark study, published in the Journal of Psychopharmacology, in 2006 — showing psilocybin holds promise for end-of-life distress in cancer patients — that largely jumpstarted what’s now known as the “Psychedelic Renaissance,” the second wave of psychedelic research in the U.S. since the 60s. The study found that after two or three psilocybin sessions, a majority of participants had significant and positive changes in their mood, while 33 percent rated the experience as the most spiritually significant experience of their life, comparable to the birth of a first child or the death of a parent. Since then, this research has continued with the same results in trials at Johns Hopkins and New York University.

“Many, many patients come to me wanting this,” says Aggarwal of psilocybin-assisted psychotherapy. “They read about it in the news or in Michael Pollan’s book.” He says it’s hard to predict, but there’s surely millions of terminally ill patients who could benefit from psilocybin therapy. In 2021 alone, an estimated 1.9 million Americans will be diagnosed with cancer, according to the National Cancer Institute. That doesn’t even take into account, says Aggarwal, all the other terminally ill patients, such as those with Lou Gehrig’s disease, whom he also works with.

Susan Patz, a 62-year-old woman with Lou Gehrig’s disease, filed an Amicus brief, a statement which can be filed to the court by someone in favor of a particular side of a case, for this lawsuit. Patz lives in the town of Monroe, Washington, where her husband John is now her caretaker as she slowly loses agency over her body and even her ability to breathe and swallow. 

“Because of the ALS, I have had to give up a lot of the activities I was passionate about,” she wrote to the court in a brief filed on May 24th. “I loved gardening, and I used to delight in driving the tractor around our property. I loved to swim at the YMCA five days a week. I loved cooking and trying new recipes. I can no longer do any of those things.” She often stays up until 3 or 4 in the morning, because she can’t sleep; she used to be “foodie,” but now doesn’t want to eat or even see friends for fear that they’ll see her as a “sick person.”

“I am desperate to try something that will work, something that will enable me to experience joy and pleasure again,” she wrote to the court. “If the Right-to-Try laws don’t allow someone like me the chance to try something that may help alleviate my suffering, then what good are they?”

On June 21st, the Department of Justice will file a brief on behalf of the Drug Enforcement Administration. On July 12, the petitioners — Aggarwal and his patients — will be given the opportunity to reply. And then, likely in September, the oral argument will take place in which, Tucker says, they may get their first insights into where the court stands on the case. She’s hopeful that perhaps they won’t even get that far, though, because the Drug Enforcement Administration will reach out with the intention of finding a resolution.

Either way, Tucker says, if the case passes, the next doctor and patient who want access to psilocybin for end-of-life distress shouldn’t need to take it to court again. If they succeed in Washington, then, she says, doctors and patients in states with Right to Try laws should be able to access psilocybin.

There’s many unknowns, however, about how doctors and patients would go about notifying the DEA when they’re going to conduct psilocybin therapy — and how they would access the psilocybin itself. Currently, under Right to Try laws, doctors don’t need government approval at all — they can go straight to manufacturers to request access to a drug that’s under investigation for their patient. But the process might be different for psilocybin and a host of practical issues exist, too, such as that it’s difficult to find federally-licensed labs making synthetic psilocybin as there’s no publicly available directory. At this point, Tucker says, they’re just focused on taking things in “small bites.”

“It kind of kills me that I have to be dying to even possibly have access to this medicine when I think it could be incredibly helpful for so many people that maybe don’t fall into that category,” says Baldeschwiler. “I truly, truly am hoping that we have some open minds and open hearts with regards to the DEA and that they honor the intent and the letter of the law because we fall within it.”

Complete Article HERE!

Rethinking quality care

— A long-term care psychologist’s perspective

By Eleanor Feldman Barbera, Ph.D.

Quality care is often considered from a medical perspective, with the focus on providing the best possible medical services. This is, of course, an essential element of the services provided in long-term care.

But at a time when there’s a greater push for community care over nursing and rehabilitation centers, it’s worth rethinking what quality means to the residents themselves. After 20-plus years of talking to them, some general themes are clear.

Which features are most important to a particular resident depends to a significant degree on which of the four categories they fall into: short-term rehab (STR), long-term care (LTC), end of life (EOL), or relatively young with concurrent substance abuse and/or mental health problems (SAMI). While the categories aren’t mutually exclusive, I find them a helpful framework in considering resident needs.

Moreover, while most nursing homes have residents from each category, some facilities have a larger proportion of one population over another. For example, tallying data from LTCFocus.org shows that in 2019 the average U.S. facility had almost 12% of its population with a diagnosis of schizophrenia or bipolar disorder, but some facilities had none and some had over 95% of their residents with these diagnoses. 

Facilities should therefore consider their population makeup to better address their particular mix of residents. 

All residents

All residents in each category require their basic needs met. As we learned in grade school, this means food, clothing and shelter. In a nursing home setting, we can include assistance with activities of daily living (ADLs). 

Facilities consistently provide food and shelter, but if residents don’t have clothing, they wear hand-me-downs or medical gowns. This is a frequent source of distress for residents, who find it humiliating and depersonalizing. 

Meager personal needs allowances (PNA) without inflation adjustments cannot cover clothing costs. In New York State, for instance, the PNA has been $50 per month since 1980. An inflation-adjusted amount would be a more reasonable $159.60 per month, which would allow for a haircut (not a covered necessity!), cell phone service and a new shirt.

Quality care would offer residents a better means to access their funds so that they’re not dependent on family or staff, especially since an increasing number of residents have no community contacts. I like the idea of a debit card linked to their facility accounts so that they can order items online, thereby increasing their independence and reducing demands on staff.

We also fall short on providing an adequate level of assistance with ADLs. The single most distressing aspect of care for virtually all residents is not being toileted in a timely fashion. If we addressed this, the perception of quality care would increase dramatically and we’d prevent a host of additional and costly problems such as falls and skin breakdown, as I outlined in If toileting were a billable service….

Short-term residents

Residents who are admitted for short-term rehab following brief illnesses, knee replacement surgeries, etc. require the usual focus on their physical health, including medical care and rehabilitation.

Other primary concerns for these residents include pain management, adjusting to physical impairment and practical issues such as paying bills so that they have a home upon discharge.

Quality care would suggest swift access to pain management specialists and universal referral for psychological evaluations (rather than on a case-by-case basis), as well as a better means to assist people with managing problems at home. 

STR residents frequently require medical follow-up from outside professionals, necessitating coordination between providers. If the field had “transition specialists,” to track and meet resident needs from hospital to clinic to nursing facility to home, this would vastly improve care. Transition specialists could also take on tasks such as picking up mail and clothing to ease the foreseeable difficulties of STR residents.

Long-term residents

LTC residents tend to be more stable medically and to have completed the process of impoverishment (a very troubling issue for them) so that they’re no longer worried about bills and finances. Their focus is generally on remaining connected to family members, engaging in absorbing recreational pursuits and maintaining their physical abilities. 

Facilitation of family communication, connection with other residents in meaningful activities and ongoing exercise by dedicated staff leads to quality care to this group.

End of life care

For a variety of reasons, very ill residents frequently receive medical interventions that are painful, stressful, expensive and unlikely to improve their conditions. Hospice and palliative care are often initiated too late for residents to gain the most benefit. 

Quality care for these residents would involve deeper conversations about end of life wishes for residents and their family members, a greater team emphasis on providing a “good” death based on their wishes and earlier involvement of the hospice and/or palliative care team. 

Younger, mentally ill and substance-abusing residents

It’s a societal failure that relatively young individuals with mental illness, many of whom have lacked adequate social supports and have attempted to self-medicate with drugs and alcohol, would find themselves living in a nursing home following a physical health crisis. 

It would be more fitting for the country to develop care homes where people with concurrent physical and mental health problems can be treated for both, in an environment with more independence and suitable activities and peers.

Nevertheless, our facilities are increasingly filled with such residents, who have almost doubled in number since 2000. Providers looking for suggestions on how to manage this population will find ideas in my 2019 column, Severely mentally ill residents: A ‘perfect storm’ creates a SNF wave. 

Conclusion

As the provision of eldercare is reexamined in the aftermath of the pandemic, we have the opportunity to rework old assumptions and procedures. The framework outlined above is one way to consider the needs of a diverse population and to create long-term care that provides higher quality care for all residents.

Complete Article HERE!

Does Medicare Cover Hospice?

The answer is yes, but you must qualify and use a Medicare-approved hospice provider.

By Kate Ashford

As you or a loved one nears the end of life due to a terminal illness, hospice care might be a consideration. Hospice is a type of care in which a team of specialized health care professionals make someone who is terminally ill as comfortable as possible during the time they have remaining.

Medicare does cover hospice, but you must meet specific requirements [1]:

  • The hospice provider must be Medicare-approved.
  • You must be certified terminally ill by a hospice doctor and your doctor (if you have one), meaning you’re expected to live six months or less.
  • The hospice care must be for comfort care, not because you’re trying to cure your condition.
  • You must sign a statement opting for hospice care over other Medicare benefits to treat your illness. (See an example of this statement here [2].) If you’re thinking about seeking treatment to cure your illness, talk to your doctor — you can stop hospice care at any point.

Hospice care through Medicare generally takes place in your home or a facility where you live, such as a nursing home.

What hospice care is covered?

Hospice care providers care for the “whole person,” meaning they help address physical, emotional, social and spiritual needs [3].

  • All items and services needed for pain relief and symptom management.
  • Medical, nursing and social services.
  • Drugs to manage pain.
  • Durable medical equipment for pain relief and managing symptoms.
  • Aide and homemaker services.
  • Other covered services needed to manage pain and additional symptoms, and spiritual and grief counseling for you and family members.

In addition to you and your family members, your hospice care team may include some or all of the following:

You’ll also have the option of a hospice nurse and doctor who are on-call 24/7, for the sole purpose of giving your family support.

What will it cost?

Under Original Medicare, there are no costs for hospice care, although you’ll still pay any Medicare Part A and Medicare Part B premiums.

You’ll pay a copayment of up to $5 for each prescription for outpatient drugs to manage pain and symptoms. You may also pay 5% of the Medicare-approved amount for inpatient respite care — this is care you get in a Medicare-approved facility so your day-to-day caregiver can rest.

What isn’t covered?

Once your hospice benefit has begun, Medicare will not cover any of the following:

  • Curative treatment: Any treatment meant to cure your terminal illness or any related conditions.
  • Curative drugs: Prescription drugs meant to cure your condition.
  • Care from a hospice provider that wasn’t arranged by your hospice medical team. Once you have a hospice provider, you must get care arranged by them. You can still see your primary doctor or nurse practitioner if you’ve picked them to be the attending medical professional that helps manage your care.
  • Room and board: If you’re at home or you live in a nursing home or hospice inpatient facility, Medicare will not cover room and board. If your hospice team decides you need a short inpatient or respite care stay, Medicare will cover the costs, although you may owe a small copayment.
  • Care received as a hospital outpatient (such as in an ER), as a hospital inpatient or ambulance transport. However, Medicare will cover these services if they’re arranged by your hospice team or they’re not related to your terminal illness.

Starting hospice care

If you have Medicare Advantage, your plan can help you find a local hospice provider.

The hospice benefit is meant to allow you and your family to stay together at home unless you require care at an inpatient facility. If you need inpatient care at a hospital, the arrangements must be made by your hospice provider — otherwise you might be responsible for the costs of your hospital stay [4].

How long can you get hospice care?

If you’ve been in hospice for six months, you can continue to receive hospice care, provided the hospice medical director or hospice doctor reconfirms your terminal illness at a face-to-face meeting.

If you have other health issues that aren’t related to your terminal illness, Medicare will continue to pay for covered benefits, but generally, hospice focuses on comfort care.

Under your hospice benefit, you’re covered for hospice care for two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. At the start of every benefit period after the first, you must be recertified as terminally ill.

What if you’re in a Medicare Advantage plan?

Once your hospice benefit begins, everything you need will be covered by Original Medicare, even if you decide to stay in your Medicare Advantage plan or another Medicare health plan. (You do have to continue paying the premiums.)

If you remain a member of a Medicare Advantage plan, you can use the plan’s network for services that aren’t related to your terminal illness, or you can use other Medicare providers. Your costs will depend on the plan and how you follow the plan’s rules.

Nerdy tip: If you start hospice care after Oct. 1, 2020, you can request a list of items, services and drugs from your hospice provider that they’ve classified as unrelated to your terminal illness and related conditions, including the reasons behind their inclusion on the list. (Find an example of this kind of statement here.)

Can you stop hospice care?

If your condition gets better or goes into remission, you may wish to end hospice care. You can stop hospice care at any point, but you must make it official: You’ll need to sign a form that states the date your care will stop.

Note that you should sign a form of this kind only if you are ending hospice — there are no forms with an end date when you start hospice care.

If you were in a Medicare Advantage plan, you’ll still be a member of that plan after you end hospice and are eligible for coverage from the plan. If you’re a member of Original Medicare, you can continue with Medicare after you end hospice care.

If you have additional questions about your Medicare coverage, visit Medicare.gov or call 1-800-MEDICARE (800-633-4227, TTY: 877-486-2048).

Works cited

Complete Article HERE!

End-of-life care: people should have the option of general anaesthesia as they die

By and

Dying patients who are in pain are usually given an analgesic, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they can be given a sedative – something to make them more relaxed and less distressed at the end of life. We have recently written about a third approach: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.

There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.

But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.

Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.

These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “go gentle into that good night”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.

The choice of general anaesthesia at the end of life is potentially popular. Last year, we surveyed more than 500 people in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying.

You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, euthanasia is illegal. This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised the right for dying patients to be unconscious.

Wouldn’t it be too risky?

There are side-effects with all medicines, but recent advances mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.

Tray of anaesthetic drugs.
Tray of anaesthetic drugs.

Previous studies that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.

This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.

Complete Article HERE!

Efforts to reduce opioid prescriptions may be hindering end-of-life pain management

By Jon Furuno

Policies designed to prevent the misuse of opioids may have the unintended side effect of limiting access to the pain-relieving drugs by terminally ill patients nearing the end of their life, new research led by the Oregon State University College of Pharmacy suggests.

A study of more than 2,500 hospital patients discharged to hospice care over a nine-year period showed a decreasing trend of opioid prescriptions as well as an increase in the prescribing of less powerful, non-opioid analgesics, meaning some of those patients might have been undertreated for their pain compared to similar patients in prior years.

The findings, published in the Journal of Pain and Symptom Management, are an important step toward optimizing pain management and minimizing the suffering of dying patients. Hospice care refers to treatments whose goal is to maximize comfort and quality of life as opposed to prolonging life.

Researchers at OSU, Oregon Health & Science University, the Dana Farber Cancer Institute and Ariadne Labs in Boston, the University of Massachusetts Medical School and the University of Maryland School of Pharmacy used electronic health record data to examine 2,648 discharges of adult patients to hospice care.

The discharges were from an acute care, academic hospital between Jan. 1, 2010, and Dec. 31, 2018. The average patient age was 65, more than half had cancer, and the study sought to determine the year by year frequency of patients receiving opioid prescriptions.

After adjusting for factors that could affect prescription frequency, including age, specific diagnosis and where the patient was to receive hospice care, the results showed a nearly 12% downward trend from the first year (91.2%) to the last (79.3%).

“Pain is a common end-of-life symptom and it’s often debilitating,” said the study’s lead author, Jon Furuno, an associate professor and the interim chair of the Oregon State Department of Pharmacy Practice, who notes that more than 60% of terminal cancer patients report “very distressing pain.”

Opioids, a class of drugs that block pain signals between the body and brain, are an effective pain management tool. But there are barriers, Furuno said, to the optimal prescribing of opioids.

Among the hurdles are timely and accurate pain assessments, patient and caregiver concerns regarding addiction, and caregiver concerns about making mistakes in administering the meds. Additional obstacles are policies and practices aimed at limiting opioid use in response to the opioid epidemic.

Traced to over-prescribing that began in the 1990s, the epidemic claims more than 40,000 American lives annually, according to the U.S. Department of Health and Human Services. Ten million people a year misuse prescription opioids and 2 million suffer from an opioid use disorder. Opioids can be highly addictive and they exist both as prescription painkillers like morphine, hydrocodone, fentanyl and oxycodone and street drugs such as heroin.

Five years ago, the Centers for Disease Control and Prevention produced a guideline for prescribing opioids for chronic pain, and there have been several other federal, state and local efforts over the last 10 years to curb opioid prescribing, Furuno said.

“There are some concerns, however, that indiscriminate adoption or misapplication of these initiatives may be having unintended consequences,” he said. “The CDC Prescribing Guideline and the other initiatives weren’t meant to negatively affect patients at the end of their lives, but few studies have really looked at whether that’s happening. Our results quantify a decrease in opioids among patients who are often in pain and for whom the main goal is comfort and quality of life.”

Furuno adds that the concurrent increase in non-opioid analgesic prescriptions suggests health care providers remained concerned about pain management even as they wrote fewer opioid prescriptions.

“Sometimes non-opioids alone are the best choice, or non-opioids in combination with opioids,” he said. “But it’s important to remember that non-opioids alone are also not without risk and that delaying the start of opioid therapy may be delaying relief from pain.

“Even among patients prescribed opioids during the last 24 hours of their inpatient hospital stay, opioid prescribing upon discharge decreased,” Furuno added. “It seems unlikely that patients would merit an opioid prescription on their last day in the hospital but not on their first day in hospice care, and it’s well documented that interruptions in the continuity of pain treatment on transition to hospice are associated with poor patient outcomes.”

Death, one day, is inevitable. Suffering should not be.

A temporary hospital at the Javits Center in New York on March 27.

By Sebastian Mallaby

About a month before the coronavirus pandemic engulfed us, my mother understood that she was dying. She had cancer. She had struggled to swallow food and maintain her weight. She was so light that I could lift her like a 12-year-old. On her firm instructions, the ambulance we children had arranged to take her to the oncologist was rerouted to a hospice. There, she received tender and expert end-of-life care. After four days, she died: peacefully, without pain, and with her family around her.

Today, this memory feels weirdly distant. In Italy and Spain — and soon in other countries — patients are dying in opposite conditions to the ones my mother experienced. They go to hospitals hoping for treatment. But, for lack of ventilators, some of them die gradually, alone. Visits from loved ones are often prohibited.

The flood of commentary on the pandemic focuses, correctly, on how to reduce fatalities. But we should also consider how to ease the loneliness and pain of those deaths that are inevitable. No one wants to die slowly in a medical hangar, cut off from family and friends. Rather, most want something as close as possible to what my mother had. They want to choose their own balance between prolonged life and prolonged pain. They hope to have the right to reconsider their choices.

Of course, in the current crisis, the hospices cannot serve everybody, and infectious disease presents risks to caregivers that cancer does not. The imperative is, therefore, to give people the tools to manage death at home, as humanely and safely as possible. Yet this component of our response to the pandemic is missing. We have not grappled with the need to distribute morphine to those who are suffering, even if this is a risky course, as the opioid crisis makes obvious; once we have finally supplied our medical professionals with the masks and other protective gear they need, we need to do the same for family caregivers. But we do not discuss these things, because we are determined to resist death, not dwell on the question of how we might go about dying.

My mother’s last lesson to her children was that this obstinacy is mistaken. While I was vainly learning all I could about her treatment options, she was coming to terms with the reality she could feel around her liver. “No more abracadabra,” she told me fiercely, when I protested that it was too early to give up. She knew she would soon die, and she wanted a good death.

A good death requires lucidity, not magical thinking. Today, this means confronting the reality of overloaded hospitals, and being honest about their inability to help all those who are stricken. In Italy, doctors have had to perform a kind of triage normally seen in wartime: They allocate life-saving ventilators based on age and health status. The same has happened in Madrid, where hundreds queue to be admitted to emergency rooms. Countries such as the United States and Britain will be lucky to escape this fate. New York’s governor, Andrew M. Cuomo, has repeatedly sounded the alarm about the shortage of ventilators. “You’re going to be thousands short. Thousands,” he said on March 15.

Hospitals don’t like to talk about the terms of the triage. Like the rest of us, they prefer to focus on preventing death; they recoil from being explicit about when death might have to be accepted. As a recent article in the New England Journal of Medicine noted, the absence of clear guidelines burdens front-line clinicians, who are forced to make heart-rending choices — doctors in Italy have wept under the pressure. But the absence of clear guidelines also leaves citizens adrift. If you or I fall seriously ill, will we have access to a ventilator?

Last week, two medically connected relatives called me. Being well informed and 70, they both know they fall on the wrong side of any triage. They have therefore resolved that, if their lungs begin to fail, they will avoid going to the hospital. At 70 — even in their 80s — patients still have a good chance of surviving covid-19 at home. But if they do not, my relatives’ definition of a good death is to be together at the end, even at the risk that one will infect the other. All that they ask is access to the palliative drugs that will control the suffering.

Society should think about the millions of people who are not medical insiders, and who should be helped to understand the choices that may potentially confront them. No doubt if governments and hospitals made public their criteria for triage, people would be horrified. But at least they could decide whether to seek help at a hospital or remain in their own beds. And the medical authorities, having leveled with the citizens, could be more forthcoming about the help available at home. To anyone who has witnessed death, it would be a huge relief to know that at least the pain can be managed. Death will be inevitable for each of us, one day. Terrible suffering should not be.

Complete Article HERE!

Fear of ‘perfect storm’ with opioid prescribing and terminally ill patients

A prominent academic wants to alleviate GPs’ concerns about potential professional repercussions – and prevent them from leaving palliative care.

By Matt Woodley

Dr Geoffrey Mitchell, Professor of General Practice and Palliative Care at the University of Queensland, recently wrote an article on the ‘very public’ debate relating to opioid use, and tension between standard end‐of‐life care and voluntary assisted dying, as a ‘perfect storm’ that is impacting GPs and other health professionals.

‘Some are choosing to abandon end-of-life care altogether rather than risk professional ruin should they persist in the use of any opioid therapy,’ Professor Mitchell said.

Professor Mitchell cited previous newsGP articles as evidence doctors are worried. He said he was motivated to write his article in order to help alleviate concerns and prevent a wave of GPs from leaving palliative care.

‘[GPs responding like this was] no surprise to me. I’m aware of the risk-averse nature of a lot of GPs and the fear of litigation is quite high with some of my colleagues,’ he told newsGP.

‘The fear is that the use of medicines to minimise suffering and distress at the very end of life may hasten death and be construed by critics as euthanasia by stealth.

‘The reality is that the person is dying. While treatments such as opioids may theoretically shorten life marginally, it is the disease that causes death, not the treatment.’

In a recent ABC interview, RACGP President Dr Harry Nespolon agreed with this position and reiterated that the college is alarmed about the impact increased scrutiny on opioid prescription is having on doctors providing palliative care.

‘Good palliative care does require the use of high-dose opioids, and that’s what patients deserve,’ he said.

‘They deserve a good death and a painless death. All this is doing is asking doctors to prescribe fewer opioids for patients who really should be getting them.’

According to Professor Mitchell, the increased emphasis on opioid diagnosis, combined with incoming voluntary assisted dying laws, has emboldened critics of palliative care and led to misinformation that can actually harm patients.

‘If [terminally ill patients] need strong opioid medication and can’t get it because their doctor won’t prescribe it, well then that’s the other side of the coin – the person is going to be suffering unnecessarily in their final days and hours, and that is unacceptable,’ he said.

‘Critics of palliative care think it’s quite often assisted dying under a legal guise, which is not true.

‘It’s just wrong, but it’s out there and so people who might not be feeling particularly confident about what they’re doing will say, “Well, I don’t want a bar of it”.’

However, despite the current climate of fear, Professor Mitchell believes a study he co-authored last year should go some way towards alleviating litigation concerns and help ensure patients receive proper medical care.

‘Of all case law online and all tribunals, all settings, we found 12 cases. Of those, only two had adverse findings recorded, and neither led to criminal proceedings,’ he said.

‘What that says is that if your case is looked at, if you’ve shown due care and attention, the likelihood of getting into trouble is negligible.

‘Many of the cases were … findings which were more to do with system issues, rather than personal issues.

‘Things go wrong, obviously, and they have to be looked at, but because people by and large know how to use opioids or are cautious about their use, when things go wrong it’s usually not the person, it’s something else.’

Complete Article HERE!