Category: Quality of Life

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Qualitative Study Shares Strategies for Successful End of Life Conversations for Patients With Cancer

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End-of-life (EOL) discussions such as advanced care, palliative care, and discontinuation of treatment are consistently being missed, according to a study published in JAMA Network Open; however, investigators highlighted existing strategies that are being utilized to achieve successful EOL conversations.

Investigators found that out of 423 outpatients encounters with 141 patients with advanced cancer, only 21 encounters (5%) included EOL discussions. When investigators included a random sample of 93 encounters, 35 encounters (35%) included missed opportunities for EOL conversations. Three patient/oncologist dyads had more than 1 encounter with a conversation pertaining to EOL, which translated to 17 of 141 dyads (12%) having at least 1 event of EOL discourse. The dyads included 13 of 39 oncologists (33%).

“In this secondary analysis of outpatient oncology visits, EOL discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EOL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts,” investigators of the study said. 

Investigators identified 3 strategies that are being used to navigate opportunities for successful EOL conversations:

Those who take advantage of opportunities for EOL discussions are able to reevaluate treatment options based on patients’ concerns, outlining the risks and benefits between treatment continuation and discontinuation. When suggesting chemotherapy for treatment, it is imperative to be transparent in letting patients know it could prolong survival, but there would be discomfort from adverse effects, the investigators stated. This allows the patients to make decisions about their own future.

Another strategy that has been utilized when making EOL decisions is allowing patients to be experts on their treatment decisions in order to meet their goals. This was accomplished by positing questions such as “What would you like?” and “What was the goal you would like to attain?”. By exploring a patient’s goals and allowing them to lead the conversation, the patient can shape treatment recommendations. Patients are able to explore their thoughts and feelings with regard to treatment discontinuation in a manner that is approachable. This allows one to act as a facilitator who creates an environment of reflection, while the patient shifts their focus to decision making.

The use anticipatory guidance to frame conversations pertaining to treatment reevaluation is another useful strategy. Anticipatory guidance can be used to identify a potential timeframe in which patients will need to make decisions regarding quality of life over cancer-directed treatments. During this time, it is the oncologist’s responsibility to provide sign posts to convey when it may be time to consider quality of life over treatment. This helps patients set appropriates goals and limits as to when they might like to discontinue treatment.

There are a number of hurdles that lead to missed opportunities for or deflected EOL conversations, one of which including responding inadequately to patient concerns. Patients who are concerned about disease progression or dying are often met with partial, avoidant, or absent responses instead of opening the conversation about EOL, which limits the opportunity for patients’ conversations around goals, values, and preferences. Additionally, giving little to no response when a patient expresses fear at the idea of living for years with late stage disease could prevent the occurrence of conversations around disease burden, treatment decision making, and EOL care.

Although speaking about the future optimistically may seem helpful it does little to address patient concerns. Instead of using anecdotes about other patients who exceeded life expectancy, consider using that moment to realistically discuss the patient’s prognosis.

Additionally, expressing concern over patient’s decision to discontinue treatment could be another opportunity for a missed discussion. Although one might be able to justify their treatment decisions by stating that they are in line with the patient’s goal, it is a missed chance for discourse pertaining to quality of life and treatment goals. Moreover, declaring a patient’s next steps for treatment without holding a proper conversation is yet another missed opportunity wherein a conversation about the patient’s options could have taken place.

“Although we recognize that not every patient or appointment may necessitate an EOL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they ‘would not be surprised if they were admitted to an intensive care unit or died within one year.’ Despite the urgent necessity of EOL discussions within this population, we found far more missed opportunities than actual discussions in this analysis,” the investigators concluded.

Reference

Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193

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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

By Shelby Hartman & Madison Margolin

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↩!

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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↩!

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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↩!

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Ideal Practices For Providing End-Of-Life Care To A Loved One

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In a wheelchair in a nursing home, a woman in the last stages of a metastatic malignant breast tumor was asked what she needed for her 75th birthday. “Life” was her answer.

Aging and developing chronic medical health problems is a natural process. Unfortunately, some individuals have it harder than others and develop terminal illnesses that take a drastic toll on their health and those looking after them. In such situations, the best that close friends and family members can do is make the patient’s remaining time as pleasant and manageable as possible. The appropriate solution to turn to is good hospice or end-of-life care.

You may have heard the terms ‘palliative care.’ Suppose you have a friend or relative who has a terminal illness or is dying. In that case, palliative care aims to relieve suffering and handle problems while treating an actual illness such as cancer. The primary objective of end-of-life care is to ensure patients experience an acceptable level of comfort, personal satisfaction, and medical assistance.

Palliative care can help people who are no longer receiving treatment or whose illness is nearing death. It helps identify end-of-life care needs and facilitates trained caregivers and family members to meet all patients’ needs. It can take place at home, in nursing homes, and hospice care facilities. The palliative care team can help you set treatment goals and make crucial decisions.

Your loved one may lose the ability to speak, sit, walk, and eat. Daily tasks such as washing, grooming, dressing, and turning require full assistance from a caregiver. Your companion, the hospice team, or a caregiver with a terminal degree in nursing recommended by your doctor, can help you with these tasks. To ease the suffering, consider these ideal practices while providing end-of-life care to a loved one.

Talk to them and listen to what they have to say

Patients who know that their life is coming to an end may contemplate their beliefs, self-worth, or the purpose of their life. They may have questions about how they will be remembered or think of apologies or forgiveness from others. If the patient needs to talk about perplexing issues, you can speak and ask open or closed questions. If you’re not much of a talker, just lend an ear and listen as they unburden. Alternatively, you can also read books together, play music, or bring up very personal qualities of the patient.

Provide emotional support

Battling terminal illness and end-of-life situations can be emotionally exhausting for the experiencing them. If you are there, you can offer emotional support. Your presence nearby, sitting quietly, or holding hands can be comforting and reassuring. You can also make arrangements for other loved ones to visit and extend their support. However, to keep the patient’s comfort in consideration and ensure that you plan visits accordingly. That way, you’ll avoid too many people showing up at one time.

Creating a quiet environment with soft lighting and gentle music to remove distractions can improve the person’s mood, stimulate memories and help a person relax.

Provide comfort

Most terminal patients do not wish to make their caregivers uncomfortable. However, the truth is that there is only so much that you can do to provide comfort to someone in their final days. Given the situation, every bit counts. Consider the following tips:

  • While feeding, give a small spoonful of food. Cook meals enriched with essential oils and nutrients to ensure they’re eating healthy. It would be best to consult a doctor before meal prep to avoid giving them something that’s off the plate.
  • Dab the face with a slightly damp town to reduce dryness around the eyes. Apply medical-grade cosmetics to keep the appearance fresh and lively.
  • To facilitate breathing, gently turn the patient’s head, change the pillow or raise the head of the bed. Use a humidifier with a cool mist.
  • Apply ointments carefully on dry skin to reduce irritation.
  • Learn how to move and reposition people in bed to avoid injury.
  • Learn how to change sanitary pads, adult diapers, or insert a catheter to avoid discomfort while removing body waste.
  • Speak gently and reassuringly. Hold the patient’s hand or touch her/him gently and frequently ask if they need anything.
  • Use painkillers recommended by a doctor/professional caregiver only.
  • Observe whether the person is hot or cold. Change room temperature and bedding if necessary.

Consider respite care

It’s no easy feat to look after a patient in an end-of-life state; it takes a lot of patience, understanding, and nerve. The patient probably has many medical dispositions that require professional attention. You must be tolerant and composed enough to deal with that. However, there are alternatives to conventional caregiving options that can prove to be quite beneficial.

 Respite care aspires to provide relief for you and your family from the difficulties associated with end-of-life care. Respite care offers a unique opportunity for a mental break and recreation for everyone involved in the process. Not only is this method effective in providing comfort, but it serves as an excellent break from the otherwise gloomy atmosphere in traditional caregiving facilities. A hospice volunteer may spend a few hours meeting the patient to check on their health, or the patient may visit the hospice office close-by to the retreat.

Conclusion

Providing terminal care to a loved one can be emotionally and physically exhausting. The ideal way to go about it is by providing emotional support and comfort to your loved one. Support them, talk to them, and help them out with routine tasks such as eating and cleaning. Consider on-boarding a trained professional to ensure that you do not falter along the way.

Additionally, it would be wise to keep a watch on your own physical and mental health. You will be unable to look after your loved one if you cannot cope with the fatigue and stress that accompanies taking care of someone in their final moments. Don’t forget to love yourself in the process.

Complete Article ↪HERE↩!

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Why Canada Could Be Next To Allow Psychedelic Therapy

(And How It’s Already Changing Lives)

Canada’s federal health minister has recently granted patients, therapists and doctors with exemptions to use psilocybin mushrooms for therapeutic purposes

by Amanda Siebert

Canada has an international reputation for progressive health policies, take for example its publicly funded healthcare program and its assisted dying laws. It also led the way in drug reform when it became the first G7 country to legalize cannabis in 2018.

But in the face of a worldwide pandemic, a national overdose crisis, and mounting evidence to show that greater access to both psychedelic and other restricted drugs could have positive public health outcomes, it’s fair to say some of the country’s regulations around restricted substances are outdated.

Now, as a handful of patients and more recently doctors and therapists have been granted exemptions to use psilocybin, the nation’s federal health agency is considering making changes to existing policies that could open the door to much more than magic mushrooms.

In 2020, a handful of firms including non-profit organizations and publicly traded companies have worked with Health Canada to encourage greater access to psilocybin and other psychedelic therapies. While one has gone the route of using existing legislation to help individuals apply for exemptions, another is encouraging policy changes that would allow doctors to seek access to restricted drugs for their patients.

‘The Unknown Of What Can Happen After You Die Doesn’t Feel So Unknown To Me Anymore’

One of the earliest studies to come out of the so-called psychedelic renaissance was conducted at Johns Hopkins University in 2016, and sought to examine how psilocybin would affect depression and anxiety in patients suffering from life-threatening cancers. It found that just a single dose of psilocybin left subjects with longstanding relief, with 78% experiencing lower rates of depression and 83% experiencing lower rates of anxiety six months after receiving the treatment.

When Thomas Hartle, a 52-year-old Saskatoon resident with stage four colon cancer read the results of the study, he says he “felt like they were too good to be true.”

“But when you suffer from anxiety, you really look for whatever sources of relief you can get,” he says. Hartle enlisted the help of TheraPsil, a non-profit organization based in Victoria, B.C., to try and access psilocybin therapy for himself. Using a subsection of the Controlled Drugs and Substances Act that allows the health minister to grant an exemption for medical or scientific purposes, TheraPsil has so far assisted dozens of Canadians, including terminally ill and clinically depressed patients, as well as doctors and therapists, in the application process.

In August 2020, Health Minister Patty Hajdu granted the first exemptions to four Canadians suffering from end-of-life anxiety. One of them was Hartle.

The father, husband, and IT technician says his anxiety is “specialized to the existential kind and doesn’t extend to public speaking,” so he’s more than happy to share his experiences with psilocybin. Before his first treatment, he prepared extensively with a therapist, and has since undergone a subsequent session. Without hesitation, he says the experiences have changed his perspective on death and dying.

“What it’s changed the most for me, is that the unknown of what can happen after you die doesn’t feel so unknown to me anymore. Most of how we define ourselves is our experiences and memories and things like that. In the psilocybin experience, my consciousness existed in ways that had absolutely nothing to do with anything in this life,” he says.

“To exist in another state that has nothing to do with my identity here, and to feel comfortable and serene in that state tells me that it’s possible to have some sort of continuation of consciousness that goes beyond our experience here.”

Hartle adds he feels more empathy towards other people since his initial treatment, and says his family has noticed he uses more emotional words in his speech. As a naturally analytical thinker, he says he’s also welcomed a shift to a more creative mindset.

Beyond the positive mental benefits he’s experienced, Hartle says psilocybin also helps to relieve pain associated with migraines, which he’s suffered from since he was a child. “When I compare it to most of the other treatments that I have gone through over the last few years, psilocybin is like the opposite of side effects,” he says, laughing.

Doctors Can Access Psilocybin, Too

Dr. Emma Hapke is TheraPsil’s co-chair of research and one of 16 doctors, nurses, therapists and social workers recently granted exemptions to take psilocybin in preparation for work with patients. She is part of a committee at TheraPsil developing a training program for psychedelic assisted psychotherapy, which she hopes to kick off in 2021.

“We feel that it’s essential that therapists themselves have their own experiences in a non-ordinary state of consciousness, to be on the receiving end of that type of therapy so they can then guide others to do the same,” she says.

She emphasizes that while psychedelic substances have been shown to provide benefit for people suffering from an array of mental health conditions, it’s imperative that any psychedelic experience be paired with therapy for maximum and longstanding relief.

“The molecule in and of itself isn’t what’s healing—it’s the whole package of being in a healing relationship with a therapist and going into the non-ordinary state with psilocybin to access different parts of the psyche,” she says. “If the experience is not integrated, it’s hard for it to lead to lasting change, and so it’s really important that we’re not just talking about a psychedelic. We’re talking about psychedelic-assisted therapy.”

Spencer Hawkswell, TheraPsil’s CEO, says before August 4, seeking exemptions for terminally ill patients felt like an uphill battle. Today the mood has changed, and there is a greater sense of optimism among his team.

“I never thought I’d say that it was easy, or that Health Canada has been incredibly cooperative,” he says. “These [patients] are empowered Canadians, and we do have rights and systems that work for them. Just to have that affirmation is pretty amazing.”

Recognizing the utilitarian nature of Canada’s approach to mental healthcare and drug policy, Hawkswell says that while the current system tries to meet the needs of most, it falls short. “What TheraPsil is doing is showing that there are options beyond the current policy regulations and the norm of healthcare in Canada.”

Numinus Advocates For Special Access Program Reform

Health Canada’s Special Access Program (SAP) allows healthcare professionals to request restricted or otherwise unavailable drugs for patients who have tried existing treatments and found them to be unsuccessful. In theory, the SAP should allow doctors to request access to drugs like psilocybin, MDMA, and LSD. That changed in 2013, when under Conservative Prime Minister Stephen Harper, accessing restricted drugs through the SAP was prohibited. Since then, the only way for patients to access such substances is through clinical trials.

On December 12, Health Canada announced its intention to reverse the regulatory changes made in 2013, and initiated a 60-day comment period seeking public feedback. Dr. Evan Wood, chief medical officer at Numinus, has been advocating for changes to the program since early 2019.

Wood says by amending the SAP provision on restricted drugs, Health Canada will better align itself with the Helsinki Declaration, a set of international ethical guidelines that suggest (among other things) if a patient accesses a restricted drug through a clinical trial and finds it to be beneficial, they should be entitled to receive ongoing therapy. Currently, if a Canadian were to access a psychedelic substance or another restricted drug though a clinical trial, even with the support of a physician, they would not be able to continue to access it.

“In my view, it’s really just about stigma and the cultural baggage associated with these molecules,” Wood says. “This is bringing Canada in compliance with those international ethical guidelines, and kicking the door open a crack for Canada to be a real world leader in this area.”

While Wood acknowledges that the Covid-19 pandemic has rightfully taken the majority of Health Canada’s attention in 2020, he’s glad to see that psychedelic-assisted psychotherapy has risen to an area of needed focus, and gives full credit to the agency for proposing the regulatory reversal.

If the change to the SAP is made, Wood says access to novel psychedelic treatment has the potential to increase significantly, as interested patients would simply need to find a doctor willing to apply for access to the drug on their behalf. Applications would then be judged on an individual basis, but would be less arduous than applying for an individual Section 56 exemption, and perhaps even eliminate the need for that process entirely.

For companies like Numinus, Wood says the changes would enable them to better establish the physical infrastructure of their businesses, to train staff, and “to do all of the things that are necessary to do this kind of work safely.”

“When you put the known risks alongside the known safety of these substances, it’s a bit of a no brainer,” he says. “It’s not going to be a cure for everybody, but even to be talking about a ‘cure’ in the context of mental health challenges is a total paradigm shift.”

Some might argue that decriminalization is the obvious next step, however Health Canada isn’t alluding to that just yet. In an email, a spokesperson for Minister Hajdu said the agency “thoroughly reviews all requests for exemption and makes decisions after taking into account the risks and benefits.”

“We still have much to learn about the risks, which is why the sale and possession of psilocybin is still illegal. Until there is a sufficient evidence base, Health Canada will review each request for an exemption on a case-by-case basis.”

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Study finds room for improvement when hospital patients transition to hospice care

by Steve Lundeberg

Terminally ill patients referred to hospice care from a hospital setting tend to be on hospice for shorter periods than those who enter hospice while living at home or in a residential care facility.

The findings by Oregon State University College of Pharmacy researchers are an important step toward improving the care experiences of dying patients and their loved ones.

Hospice care refers to treatments whose goal is to maximize comfort and as opposed to prolonging life. In general, more time on is better for patients than less time, research has shown.

“It’s well established that hospice care reduces symptom burden and improves quality of life for patients nearing the end of life and for their caregivers,” said the study’s lead author, Jon Furuno, an associate professor and the interim chair of the Department of Pharmacy Practice. “Patients receiving hospice care also have their discomfort controlled better and experience more satisfaction with their care compared to patients who die without receiving hospice care.”

But Furuno’s recent research, published in the journal Medical Care, points out some key variations in hospice transitions and experiences, opening the door to changes that could make important, positive differences for patients and families.

Patients can be referred to hospice care from any location, Furuno explains, but little is known about differences between referrals from different care settings; i.e. hospitals, nursing homes, assisted living facilities or the someone’s .

“Are the patients enrolling in hospice at an appropriate time or later than ideal? Are they making the transition to hospice care with the right prescriptions from their providers? How do things differ among referral locations? Those are all key questions to explore to help ensure optimal patient care,” Furuno said.

The study looked at data from nearly 80,000 adult hospice patients from 19 states over a five-year period. Their average age was 79, and one-third were receiving hospice care because of a terminal cancer diagnosis.

Just over half of the decedents had been referred to hospice from a , and about one in five had been living at home at the time of their referral. Nursing homes (17%) and assisted living facilities (9%) rounded out the sample.

The results showed that hospital-referred patients were much less likely to receive hospice care before the final seven days of their life than patients referred from elsewhere; 56% of those referred from a hospital spent less than a week on hospice, compared to 30% from nursing homes, 29% from their own home, and 19% from assisted living.

“Obviously every case is unique, but generally speaking, more time in hospice care is associated with better patient and family outcomes,” Furuno said. “In our study, the median length of time on hospice was nine days.”

Another key finding involved drug prescriptions, particularly the absence or presence of a constipation-alleviating drug along with the opioids often used during hospice care. Opioids relieve pain but can cause other discomfort in the form of infrequent bowel movements.

“Hospital-referred patients had the lowest frequency of co-prescribed opioids and a bowel regimen,” Furuno said, noting co-prescription of these medications is an important indicator in the Centers for Medicare and Medicaid Services’ Hospice Quality Reporting Program.

Among hospital-referred hospice patients, fewer than 60% received that co-prescription compared to 72% of patients referred from nursing homes, nearly 70% from assisted living facilities and 63% from home.

“The study’s results suggest an opportunity for interventions that will improve the transition to hospice care and benefit patients and families,” Furuno said. “Patients transitioning from the hospital to may be the most vulnerable group because of the magnitude of the transition from actively fighting a chronic illness for months or maybe years to palliative care.”

Also, health care providers in a hospital setting may not always be sufficiently trained in preparing patients and families to make that transition, he said, adding that further research should look for explanations behind the hospice transition differences uncovered by this study.

“The end goal is policies and practices that consider these differences and trigger specialized interventions when necessary so patients can get the best care possible,” Furuno said.

Complete Article ↪HERE↩!