Palliative care for the living — more education is needed

A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.

But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.

Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.

One reason for this is that many people inaccurately think of palliative care as only care for the dying.

The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.

Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.

People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.

Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.

Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.

To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.

But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”

Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.

Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.

While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”

Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.

Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.

To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.

Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.

Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.

The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.

Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.

Complete Article HERE!

Does facing death teach us how to live a richer life?

“I’m a lot more compassionate now compared to what I was, and I’m softer in my approach.”

By Dilvin Yasa

In her lengthy career as a palliative care nurse, Elizabeth Barton has seen it all. From the guys who buy brand-new sports cars mere days before they die – “Just so they can say they had one” – to the long-lost relationships rekindled on deathbeds, little surprises her about the way we “do” death any more.

“Everyone’s different; those who have faith don’t appear to fear death as much and, of course, many speak of regrets,” says Barton. “But if there’s one thing that remains consistent about the final journey people make towards death, it’s that it’s always characteristic of the way they lived life.”

While many of us would rather not think about the reality that one day it will be our turn to be tapped on the shoulder (the fact that almost 50 per cent of Australians die intestate – that is, without a will – points to our avoidance), there is much that death and dying can teach us about living well, says Barton.

“It’s a time when people realise that the thing they value most is their human relationships. The most common lament I hear is how they wished they’d focused on spending more time with people. I’ve yet to hear a single person say, ‘Gee, I wish I’d put in more overtime at the office.’ It’s a message worth remembering while you’re still fit and healthy.”

“I FEEL LOVED EVERY SINGLE DAY”
Keely Bennett is a 43-year-old mother of two young daughters (aged nine and seven) who is battling stage-four metastatic breast cancer. In 2011, she was given two months to live.

Keely Bennett is a 43-year-old mother of two young daughters.

“The cancer had already spread all over my body – from my liver and lungs to my spine, collar bone and pelvis – by the time they found it in 2011. I was still on maternity leave with our youngest daughter so, like most mums looking after babies, I’d found ways to explain away the fatigue, breast tenderness and back pain I’d been feeling. When the nausea began, I thought it was an indication that our longed-for third baby was on its way, but nothing could have prepared me for the truth. My prognosis was two months – tops.

After 18 months we realised my battle might not end as quickly as doctors had initially anticipated. Among other issues I had chemo, an operation for brain lesions, a total hip replacement, a battle with a flesh-eating disease and radiation for a hip fracture. I didn’t have time to dwell too deeply on what my prognosis actually meant. Will-making took some encouragement by my oncology psychologist because I felt that by writing one, I was admitting defeat. I was not – and am not – ready to die.

The hardest part of living with a terminal illness is trying to find balance between being present here, today, with my family, but also planning for a future where I can no longer be by their side. I have to make the assumption that I won’t see my girls grow up, so it’s about asking myself on a daily basis, ‘Do I write them letters now for their 18th birthdays, or just go out with them and play?’

The cancer keeps finding new ways to come back, so treatment often feels like we’re playing whack-a-mole to buy extra time, but I’m focused on living today very, very well. Last year, we made a trip to Iceland, my bucket-list destination, and we’ve also taken the girls to Europe and to Disneyland. They were things we always planned to do ‘one day’, but now I know ‘one day’ doesn’t happen for everybody.

Obviously I’d change everything in a heartbeat to not have cancer, but knowing my time is limited has given me a gratitude and appreciation for what’s truly important in life. When healthy, many of us dream of a bigger house or a nicer car, but when you’re battling to live, you realise that the only thing that’s worth anything is love.

You work on your relationships, you make an effort to see more of your friends and family, and you become acutely aware of what you feel for others. More than that, you get insight into what others feel for you. I’ve always known I was loved, but now I hear it, see it and feel it every day. Yes, it’s unfortunate that this is often what it takes for people to freely say ‘I love you’, but what a joy to be able to hear and experience it.”

“FEAR CAN BE REDIRECTED”
Broadcaster and journalist Julie McCrossin, 63, was diagnosed with stage-four oropharyngeal cancer in 2013. Having celebrated five years of recovery, she’s taking the fight to a larger audience.

Broadcaster and journalist Julie McCrossin, 63.

“I faced the possibility of death head-on from day one – probably because my radiation oncologist said, ‘Julie, I expect you to live, but I won’t be surprised if you die.’ I respected him for that, but it still didn’t make my oropharyngeal cancer diagnosis any easier. What did was when he followed with, ‘Look, you’re in with a good chance – and you have a good support network.’ I looked over at my partner Melissa crying next to me and realised, ‘Yes, I may die, but I have to do everything I possibly can to stay alive.’

I felt I was engaged in a battle of survival, and what helped me get through it was thinking about my father, Robert, who was a World War II bomber pilot. I found radiotherapy devastatingly challenging, so I would focus on the fact my father survived 30 tours of duty in a position which had a very high death rate. By chance, I had 30 sessions of radiotherapy.

Once you’ve been touched by death, you’re never truly the same person again. I’ve just celebrated the five-year anniversary of my recovery, but the fear of recurrence continues. To counteract that, I’ve become heavily involved with patient advocacy, which has been a deeply positive experience. It calms me and brings me joy in ways I never could have imagined.

My battle with cancer has taught me that life is precious beyond words, and you’ll do anything to be able to stay and enjoy it for a little longer.”

Julie is an ambassador for Beyond Five – Targeting Cancer and TROG Cancer Research, and hosts the Cancer Council NSW podcast series The Thing About Cancer, which can be found at cancercouncil.com.au/podcasts. For more information about cancer, visit cancercouncil.com.au.

“I’VE LEARNT THAT JOY CAN COME WITH FORGIVENESS”

Irene Hellas, 46, lost her partner George to suicide in 2012, prompting a long period of soul-searching. She now works with Suicide Prevention Australia.

Irene Hellas, 46.

“Ten days before George took his own life, he began a period of what he called ‘spring cleaning’. It started with a furious reorganisation of his paperwork and finances, and ended with phone calls to family and friends to offload some of his most prized possessions. Looking back now, I realise he was getting his affairs in order before he went, but although I was rattled at the time, I just didn’t know how to ask the question, ‘Are you okay?’

When I went to his house and he didn’t open the door, it couldn’t have occurred to me what was on the other side. George had never shown any sign of mental illness. His death, and the way in which he went, derailed all of us.

My dreams died with George that night. We had planned to get married and start a family, but suddenly I was alone. I was angry at life, angry at myself and angry at George for leaving me. I began retreating inward and letting my feelings consume my life, so when a friend insisted I seek help, I reluctantly agreed.

I began working one-on-one with a psychologist, attended seminars, had some life coaching and read books like This Is How We Grow, by Dr Christina Hibbert. There’s a line in that book which quickly became my personal motto: “When life throws you in the mud, plant yourself and grow.”

It was a five-year period of soul-searching before I realised that all the signs were pointing to forgiveness and finding a new purpose. Once I was able to forgive George for what he had done to me by leaving the way he did, the release everyone said would eventually happen occurred. I began to feel a strong gratitude for George and the gift he had given me by being in my life for as long as he was.

Before George’s death, I had a lot of masculine energy; I was harsh and didn’t demonstrate empathy towards others the way I could have. I’m a lot more compassionate now compared to what I was. I’m softer in my approach, in touch with my feelings, and I stress a lot less about the things I know don’t really matter.

George’s death had me questioning my purpose for a long time, but ultimately I’ve found it. I now volunteer regularly, and I’m dedicated to working with Suicide Prevention Australia to help raise awareness that most suicides are preventable. Joy, I now know, is looking outward, contributing to society and helping others, and true joy can only ever start with self-love.”

Irene is a member of Suicide Prevention Australia’s Lived Experience Network. Visit suicidepreventionaust.org to find out how to get involved and access a comprehensive list of support services.

Complete Article HERE!

Medical Marijuana and Terminal Illness

People who have been diagnosed with a terminal illness suffer a broad range of physical and emotional symptoms and other overwhelming struggles. Terminal illnesses are devastating diagnoses, and patients must learn to cope with the news that their disease cannot be cured.

When it comes to terminal illnesses, conventional medicine focuses on palliative treatment goals. This means doctors aim to make their patients feel as comfortable as possible in their last remaining weeks or months. Unfortunately, most of the drugs prescribed to terminally ill patients cause a host of unpleasant side effects, and some people flat out stop responding to conventional treatments. That’s where natural therapies come into play.

Medical cannabis is an excellent option as a complementary treatment solution alongside prescription opiates or other drugs for symptom management, but it can also be an effective alternate solution when patients suffer from side effects and no longer wish to take conventional medications.

Studies on medical cannabis and terminal illness have proven its effectiveness in treating specific symptoms that are often associated with end-of-life difficulties. Medical cannabis is a safe remedy for maintaining quality of life and providing comfort and relief for patients with terminal illnesses.

What Is a Terminal Illness?

Terminal illness is a broad term used to describe any kind of illness that is incurable or untreatable. Patients with a terminal illness have been told by their medical team that they have a certain remaining life expectancy and their disease will likely result in death. Illnesses like AIDS or cancer can be diagnosed as terminal illnesses when the disease is too advanced to be treated.

One of the primary issues surrounding a terminal illness is the psychological trauma associated with the diagnosis. Many patients fall into a deep depression and may even turn to substance abuse. Additionally, many of these patients have such advanced illnesses that they suffer from chronic pain, which only further amplifies their psychological symptoms.

Sadly, terminal illnesses affect far too many families. In 2006, the Pew Research Center reported that 42% of Americans know a friend or relative who is suffering or has suffered a terminal illness. Though this is a shocking statistic, but it’s made clearer when looking at the rates of terminal illnesses among Americans.

n the United States, cancer is the second leading cause of death. On average, more than 1,500 Americans die each day from cancer. HIV/AIDS is another potentially terminal illness taking far too many lives. In 2014, 6,721 Americans died from HIV or its complications, although the death rate associated with AIDS is steadily declining in the United States.

An under-recognized potentially terminal illness in the United States is kidney disease. According to the National Institutes of Health, advanced kidney failure kills more Americans than breast or prostate cancers. In 2013, 47,000 Americans died of kidney disease.

Terminal illness doesn’t just affect adults and seniors. The National Cancer Institute reported that in 2014, 1,960 children and adolescents under the age of 19 died from cancer.

With these high rates of terminal illness in American society, it’s no wonder many of these patients are turning to medical cannabis as a natural end-of-life therapy.

Terminal Illness History and Outlook

The landscape of illnesses has changed drastically in the past 100 years. Thanks to greater global disease awareness and advanced medical technologies, people are living longer than ever. But illnesses themselves have evolved. A hundred years ago, it was common for people to die from infections and other acute conditions that could not be treated medically.

Today, in the industrialized world, it’s less common for people to die from infections. However, chronic illnesses attributed to our environment, lifestyles and the fact that people are living longer are the new medical challenge our society faces. Generally, our high-fat diets, sedentary lifestyles and increased exposure to synthetic products and chemicals have led to new types of terminal illnesses to combat. Cancer is a potentially fatal disease that is claiming lives at an astonishing rate.

In 2003, the World Health Organization, recognizing the global cancer epidemic, published a report estimating that by 2020, cancer death rates would increase by 50% to 15 million annually.

Thankfully, since those findings were published, medical technology has advanced, and many of these expected deaths are now preventable. There are still far too many cases where cancer results in terminal illness. This is why different therapy approaches, such as medical cannabis, can help address the cases where cancer becomes fatal.

Terminal Illness Causes

There are many different types of terminal illnesses all resulting from different causes and risk factors. Here are some of the terminal illnesses patients are diagnosed with as well as their causes:

  • Cancer: Cancer is a broad term used to describe several different diseases that can affect virtually every part of the body. There are many possible causes of cancer depending on where in the body it first develops. All cancers are characterized by the mutation of normal, healthy cells into abnormal, cancerous cells. By nature, cancer cells divide and spread quickly. As they spread, they form tumors — lumps of cancerous tissue. If left untreated, tumors will begin to shut down nearby organs, as the immune system can no longer fight against the attacking cells.

All cancers are terminal if left untreated. Some cancer types are deadlier than others. Two of the deadliest forms of cancer are brain and ovarian cancers. The National Cancer Institute estimates that 16,700 Americans will die of brain cancer and 14,080 will die from ovarian cancer in 2017.

  • HIV/AIDS: HIV is acronym for the human immunodeficiency virus. It’s caused by a sexually or blood transmitted infection that attacks a person’s immune system. After years of being infected with HIV, a person’s immune system eventually becomes so weakened they develop AIDS — acute immunodeficiency syndrome — which is fatal.
  • Kidney Disease: Kidney disease is a serious, potentially terminal illness that damages a person’s kidneys. Damaged kidneys are unable to filter the blood properly, which causes waste and toxins to build up inside the body. Sadly, initial symptoms of kidney disease often go unnoticed until the condition becomes advanced. If kidney disease reaches the most advanced stage — kidney failure — the patient is no longer eligible for a kidney transplant or dialysis and the condition becomes fatal.

These conditions are some of the many well-known terminal illnesses that exist. Countless other diseases and conditions are considered terminal when patients stop responding to treatments or when the illness becomes too advanced to treat.

Terminal Illness Symptoms

While there are many different conditions that cause terminal illnesses, each having their own unique symptoms, most patients experience a similar set of symptoms during the end stages of life. These common symptoms include both physical and emotional or mental symptoms.

Here are the common symptoms experienced by people with terminal illness:

Physical Symptoms. When patients suffer advanced stages of diseases, there are common physical symptoms that occur. These symptoms include chronic pain and general weakness. Chronic pain affects more than 60% of cancer and AIDS patients. Other physical symptoms of terminal illness include:

  • Chronic weight loss
  • Anorexia
  • Loss of appetite
  • Fatigue and insomnia
  • Nausea
  • Vomiting
  • Constipation
  • Difficulty breathing

Emotional Symptoms: A terminal illness diagnosis is tragic and earth-shattering for patients and their families. Because of this, there is a range of different reactions among patients. Patients can experience emotions such as:

  • Anger
  • Fear
  • Shock
  • Denial
  • Blame
  • Depression
  • Helplessness

Many patients diagnosed with terminal illness go on to develop depression and anxiety. The Baylor University Medical Center found up to 77% of terminally ill patients suffer depression symptoms. Other reports indicate up to 20% of terminally ill patients are diagnosed with major depression — a serious and chronic grade of depression. In many cases, anxiety and delirium also accompany feelings of depression.

Conventional Terminal Illness Treatments

Treatments for terminal illness are focused on improving a patient’s comfort and quality of life in their remaining time. Terminal illnesses, however, are untreatable in the sense that they cannot be cured. Terminal illness treatments are referred to as palliative, meaning they reduce pain without an attempt to cure the disease.

Treatments focus on alleviating pain, improving strength and appetite and managing any symptoms of depression, anxiety and grief.

Here are the types of conventional treatments and care given to patients with terminal illness:

  • Opiates. Opiates are a class of drug that suppress the central nervous system and provide pain relief and a sense of euphoria. Morphine and hydromorphone are two of the most commonly prescribed opiates to relieve pain during end-of-life. Fentanyl, oxycodone and methadone are other opiates used to alleviate chronic pain for patients with terminal illness.
  • Anti-nausea medications. Nausea and vomiting are common terminal illness symptoms that can be managed effectively. Haloperidol is an anti-nausea medication that doctors prescribe to control these symptoms. Haloperidol can be taken orally or via injection.
  • Antidepressants. In many cases, doctors may prescribe terminally ill patients with antidepressants (SSRIs). Quite understandably, stress and depression arise with a patient’s knowledge of terminal illness. The physical and emotional suffering coupled with knowledge of impending death make some patients want to commit suicide, become overly stressed or too depressed to respond well to care-giving methods. Unless antidepressants are already part of the medical regimen, the patient may not respond to them in time to have any benefits before death.
  • Psychological/spiritual counseling. Doctors and experts advise patients to seek psychological or spiritual counseling to help cope with a terminal illness. Counseling helps patients better understand their condition, be better equipped to deal with it and address symptoms of depression and anxiety. Often, psychological and spiritual counseling for terminally ill patients will include the person’s family members.

Medical Cannabis for Terminal Illness

Unfortunately, many patients with terminal illnesses struggle with the types of palliative treatments they’re prescribed. Opiates and antidepressants both come with a host of side effects that can aggravate many of the end-stage struggles people experience. Medical cannabis is an alternative or complementary treatment option that many people with terminal illnesses have had success with.

The cannabis plant contains two organic compounds that provide medical benefits: tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is the compound responsible for the psychoactive effect associated with cannabis. It’s also shown to possibly reduce pain, relieve nausea and boost appetite.

CDB is the other compound that doesn’t produce psychoactive effects. However, it does treat symptoms like pain, nausea, depression and anxiety, which are all associated with terminal illness.

Legal medical marijuana such as Marinol is approved by the FDA. In some states, smoked marijuana is also legal under state law but still illegal under federal law. Both forms of medical marijuana have been shown to help with pain. They are not pain relievers, but can work with opiates to make them more effective.

According to UCSF, they conducted a study using cannabinoids with opiates and found that patients showed up to 95% decrease in chronic pain when using inhaled marijuana vapor with opiates such as morphine. It also showed that the dosages of opiates could be decreased when opiates are used in conjunction with cannabinoids.

Medical Cannabis for Alleviating Symptoms

One of the strongest arguments for medical marijuana and terminal illness is for the treatment of nausea, vomiting and loss of appetite. Cancer patients that are undergoing chemotherapy have benefited greatly from the availability of FDA approved medical marijuana. It is known to reduce nausea and vomiting, often when more traditional medical treatments for the symptoms fail to produce significant results. Nausea and Vomiting can occur with several terminal illnesses such as cancer and AIDS – related illness.

Cancer and AIDS can also result in loss of appetite. It is expected at the very end of life that appetite decreases until it is nonexistent in many cases. However, it is often good for patients to eat as much as possible until it becomes impossible. Medical marijuana can help with that and is prescribed for just such occasions. In fact, the hunger-inducing effects of medical marijuana are so well known that they are even known colloquially as “the munchies” in the recreational marijuana use community.

Medical marijuana’s effects are felt soon after ingestion and virtually immediately after inhalation. There is no waiting period as there is for antidepressants. There is no guarantee that it will alleviate depression, stress and suicidal thoughts. However, it is useful for its fast-acting benefits. There is some research to suggest that medical marijuana can help some of the symptoms associated with depression, particularly difficulty sleeping, but it is still an under-researched area of medical care.

Best Cannabis Strains for Terminal Illness

Medical cannabis a versatile and natural therapy for people diagnosed with a terminal illness. The diverse health benefits of the cannabis plant address many of the common symptoms terminally ill patients face.

Here are some of the best strains of medical cannabis for terminal illness and the symptoms these strains treat:

  • Northern Lights. Northern Lights is an Indica strain of medical cannabis. Northern Lights help with many of the major symptoms that terminally ill patients experience, including pain, depression, insomnia and loss of appetite.
  • Sour Diesel. Sour Diesel is a Sativa strain of medical marijuana for terminal illness. Sour Diesel is an excellent strain for managing terminal illness symptoms like pain, depression, fatigue and loss of appetite.
  • Sunset Sherbet. Sunset Sherbet is a hybrid strain of cannabis, meaning it’s crossed between the Sativa and Indica strains. Sunset Sherbet helps relieve terminal illness symptoms like nausea, pain, insomnia and depression.

There are countless different strains that can offer relief for terminal illness symptoms. Be sure to consult your local dispensary experts for more information on choosing the right strain for you.

Best Cannabis Uses for Terminal Illness

If you’re planning to use medicinal marijuana to treat your terminal illness symptoms, then it’s important to decide how you’ll consume it. You have a few different options. Here are some of the options for consuming medical cannabis for terminal illness:

  • Inhalation. Smoking marijuana, or inhaling it, is likely the most common method of use for medical cannabis. In addition to being easy and convenient, inhaling marijuana also provides fast-acting relief. For people suffering from chronic pain or depression, this is an important consideration.
  • Edibles. Another option for consuming medical cannabis for a terminal illness is to take it orally. This can be done through a cannabis-infused edible product such as chocolate. While taking cannabis orally delays the effects, it is a much longer-lasting effect than inhaling marijuana. Additionally, many patients prefer edible products over smoking because it doesn’t cause respiratory problems.
  • Drinkables. Drinkable cannabis products are another great innovation when it comes to methods of consuming medical marijuana. Drinkables are cannabis-infused drinks that are easy and convenient to use. Drinkables some in soda-like products, or you can brew cannabis tea. Like edibles, the effects from drinkable cannabis products tend to be stronger and longer-lasting.

Cannabis Side Effects and Precautions

Medical marijuana for terminal illness is generally very safe to use. There are limited side effects for most people who consume medicinal cannabis products. Some patients who are suffering major depression because of their terminal illness diagnosis may be concerned that marijuana products may heighten their depression symptoms. However, there is no research to suggest that prescribed medical marijuana can harm the terminally ill.

Additionally, marijuana does not interact negatively with other end-of-life treatments. No amount of it will result in fatal overdose. Further research is necessary to see if these trends in medical marijuana use hold true. However, its use for terminal illness is promising thus far.

If you’re planning to take medical cannabis for terminal illness symptoms, it’s important to follow the dosage instructions exactly as prescribed. For many people, the effects of marijuana make take a while to kick in. This is why it’s important to start with a small dose and gradually build from there.

Medical cannabis is a safe, alternative remedy for treating many of the terrible symptoms associated with terminal illness. If you or someone you love has been diagnosed with a terminal illness and would like to learn more about medical cannabis as an alternative treatment option, make an appointment with a local, qualified physician through MarijuanaDoctors.com today or sign up for our newsletter.

Complete Article HERE!

Meet the ‘end-of-life doulas’ guiding people to their death

By Emily Ford

Lizzie Neville is an ‘end-of-life doula’ who helps people prepare for death.

Doula is a term traditionally associated with childbirth, describing someone who helps a woman before, during or after childbirth.

But ‘death doula’ Lizzie, from Alton, Hampshire, was hired by Lowri Rylance, from Basingstoke, when her husband was diagnosed with terminal brain cancer.

We took a snapshot of the last year of people’s lives – here’s what we found

By

Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

What does it mean to have a ‘good death’?

By

What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!