Tag: End of Life Care

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Palliative care for the living — more education is needed

By Drs. Angira Patel and Kelly Michelson

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.

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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.

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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.

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

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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.

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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↩!

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

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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.”

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Self-Care for Family Caregivers

First, Care for Yourself

On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.

Effects of Caregiving on Health and Well-Being

We hear this often: “My husband is the person with Alzheimer’s, but now I’m the one in the hospital!” Such a situation is all too common. Researchers know a lot about the effects of caregiving on health and well-being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers.1 The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.

Older caregivers are not the only ones who put their health and well-being at risk. If you are a baby boomer who has assumed a caregiver role for your parents while simultaneously juggling work and raising adolescent children, you face an increased risk for depression, chronic illness, and a possible decline in quality of life.

But despite these risks, family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They report:

  • Sleep deprivation
  • Poor eating habits
  • Failure to exercise
  • Failure to stay in bed when ill
  • Postponement of or failure to make medical appointments for themselves

Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs. Caregiving can be an emotional roller coaster. On the one hand, caring for your family member demonstrates love and commitment and can be a very rewarding personal experience. On the other hand, exhaustion, worry, inadequate resources, and continuous care demands are enormously stressful. Caregivers are more likely to have a chronic illness than are non-caregivers, namely high cholesterol, high blood pressure, and a tendency to be overweight. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed.

Taking Responsibility for Your Own Care

You cannot stop the impact of a chronic or progressive illness or a debilitating injury on someone for whom you care. But there is a great deal that you can do to take responsibility for your personal well-being and to get your own needs met.

Identifying Personal Barriers

Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, with taking care of others an easier option. However, as a family caregiver you must ask yourself: “What good will I be to the person I care for if I become ill? If I die?” Breaking old patterns and overcoming obstacles is not an easy proposition, but it can be done—regardless of your age or situation. The first task in removing personal barriers to self-care is to identify what is in your way. For example:

  • Do you think you are being selfish if you put your needs first?
  • Is it frightening to think of your own needs? What is the fear about?
  • Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
  • Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?

Sometimes caregivers have misconceptions that increase their stress and get in the way of good self-care. Here are some of the most commonly expressed:

  • I am responsible for my parent’s health.
  • If I donʼt do it, no one will.
  • If I do it right, I will get the love, attention, and respect I deserve.
  • Our family always takes care of their own.
  • I promised my father I would always take care of my mother.

“I never do anything right,” or “Thereʼs no way I could find the time to exercise” are examples of negative self-talk, another possible barrier that can cause unnecessary anxiety. Instead, try positive statements: “Iʼm good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind tends to believe what you tell it.

Because we base our behavior on our thoughts and beliefs, attitudes and misconceptions like those noted above can cause caregivers to continually attempt to do what cannot be done, to control what cannot be controlled. The result is feelings of continued failure and frustration and, often, an inclination to ignore your own needs. Ask yourself what might be getting in your way and keeping you from taking care of yourself.

Moving Forward

Once youʼve started to identify any personal barriers to good self-care, you can begin to change your behavior, moving forward one small step at a time. Following are some effective tools for self-care that can start you on your way.

Tool #1: Reducing Personal Stress

How we perceive and respond to an event is a significant factor in how we adjust and cope with it. The stress you feel is not only the result of your caregiving situation but also the result of your perception of it—whether you see the glass as half-full or half-empty. It is important to remember that you are not alone in your experiences.

Your level of stress is influenced by many factors, including the following:

  • Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
  • Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
  • Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
  • Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
  • Whether or not support is available.
     

Steps to Managing Stress

  1. Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Donʼt wait until you are overwhelmed.
  2. Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
  3. Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):“God grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    and (the) wisdom to know the difference.    ”
  4. Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
     

Tool #2: Setting Goals

Setting goals or deciding what you would like to accomplish in the next three to six months is an important tool for taking care of yourself. Here are some sample goals you might set:

  • Take a break from caregiving.
  • Get help with caregiving tasks like bathing and preparing meals.
  • Engage in activities that will make you feel more healthy.
  • Goals are generally too big to work on all at once. We are more likely to reach a goal if we break it down into smaller action steps. Once you’ve set a goal, ask yourself, “What steps do I take to reach my goal?” Make an action plan by deciding which step you will take first, and when. Then get started!

Example (Goal and Action Steps):
Goal: Feel more healthy.
Possible action steps:

  1. Make an appointment for a physical checkup.
  2. Take a half-hour break once during the week.
  3. Walk three times a week for 10 minutes.
     

Tool #3: Seeking Solutions

Seeking solutions to difficult situations is, of course, one of the most important tools in caregiving. Once youʼve identified a problem, taking action to solve it can change the situation and also change your attitude to a more positive one, giving you more confidence in your abilities.

Steps for Seeking Solutions

  1. Identify the problem. Look at the situation with an open mind. The real problem might not be what first comes to mind. For example, you think that the problem is simply that you are tired all the time, when the more basic difficulty is your belief that “no one can care for John like I can.” The problem? Thinking that you have to do everything yourself.
  2. List possible solutions. One idea is to try a different perspective: “Even though someone else provides help to John in a different way than I do, it can be just as good.” Ask a friend to help. Call Family Caregiver Alliance or the Eldercare Locator (see Resources list) and ask about agencies in your area that could help provide care.
  3. Select one solution from the list. Then try it!
  4. Evaluate the results. Ask yourself how well your choice worked.
  5. Try a second solution. If your first idea didnʼt work, select another. But donʼt give up on the first; sometimes an idea just needs fine-tuning.
  6. Use other resources. Ask friends, family members, and professionals for suggestions.
  7. If nothing seems to help, accept that the problem may not be solvable now. You can revisit it at another time.

Note: All too often, we jump from Step 1 to Step 7 and then feel defeated and stuck. Concentrate on keeping an open mind while listing and experimenting with possible solutions.

Tool #4: Communicating Constructively

Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need. The box below shows basic guidelines for good communication.

Communication Guidelines

  • Use “I” messages rather than “you” messages. Saying “I feel angry” rather than “You made me angry” enables you to express your feelings without blaming others or causing them to become defensive.
  • Respect the rights and feelings of others. Do not say something that will violate another personʼs rights or intentionally hurt the personʼs feelings. Recognize that the other person has the right to express feelings.
  • Be clear and specific. Speak directly to the person. Donʼt hint or hope the person will guess what you need. Other people are not mind readers. When you speak directly about what you need or feel, you are taking the risk that the other person might disagree or say no to your request, but that action also shows respect for the other personʼs opinion. When both parties speak directly, the chances of reaching understanding are greater.
  • Be a good listener. Listening is the most important aspect of communication.
     

Tool #5: Asking for and Accepting Help

When people have asked if they can be of help to you, how often have you replied, “Thank you, but I’m fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can’t handle everything yourself.

Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.

Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength.

Tips on How to Ask

  • Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
  • Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no?
  • Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
  • Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do.
  • Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
  • Avoid weakening your request. “Itʼs only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with Grandma from 9 a.m. until noon?”
     

Tool #6: Talking to the Physician

In addition to taking on the household chores, shopping, transportation, and personal care, 37 percent of caregivers also administer medications, injections, and medical treatment to the person for whom they care. Some 77 percent of those caregivers report the need to ask for advice about the medications and medical treatments. The person they usually turn to is their physician.

But while caregivers will discuss their loved oneʼs care with the physician, caregivers seldom talk about their own health, which is equally important. Building a partnership with a physician that addresses the health needs of the care recipient and the caregiver is crucial. The responsibility of this partnership ideally is shared between you, the caregiver, the physician, and other healthcare staff. However, it will often fall to you to be assertive, using good communication skills, to ensure that everyoneʼs needs are met—including your own.

Tips on Communicating with Your Physician

  • Prepare questions ahead of time. Make a list of your most important concerns and problems. Issues you might want to discuss with the physician are changes in symptoms, medications or general health of the care recipient, your own comfort in your caregiving situation, or specific help you need to provide care. The physician only sees a moment in time with the patient. Make sure you let him/her know what your concerns are in terms of daily care/health.
  • Enlist the help of the nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about various tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home.
  • Make sure your appointment meets your needs. For example, the first appointment in the morning or after lunch are the best times to reduce your waiting time or accommodate numerous questions. When you schedule your appointment, be sure you convey clearly the reasons for your visit so that enough time is allowed.
  • Call ahead. Before the appointment, check to see if the doctor is on schedule. Remind the receptionist of special needs when you arrive at the office.
  • Take someone with you. A companion can ask questions you feel uncomfortable asking and can help you remember what the physician and nurse said.
  • Use assertive communication and “I” messages. Enlist the medical care team as partners in care. Present what you need, what your concerns are, and how the doctor and/or nurse can help. Use specific, clear “I” statements like the following: “I need to know more about the diagnosis; I will feel better prepared for the future if I know what’s in store for me.” Or “I am feeling rundown. I’d like to make an appointment for myself and my husband next week.” Or “I need a way for my mother to sleep at night as I am now exhausted being up every two hours at night with her.”

 

Tool #7: Starting to Exercise

You may be reluctant to start exercising, even though youʼve heard itʼs one of the healthiest things you can do. Perhaps you think that physical exercise might harm you, or that it is only for people who are young and able to do things like jogging. Fortunately, research suggests that you can maintain or at least partly restore endurance, balance, strength, and flexibility through everyday physical activities like walking and gardening. Even household chores can improve your health. The key is to increase your physical activity by exercising and using your own muscle power.

Exercise promotes better sleep, reduces tension and depression, and increases energy and alertness. If finding time for exercise is a problem, incorporate it into your daily activity. Perhaps the care recipient can walk or do stretching exercise with you. If necessary, do frequent short exercises instead of those that require large blocks of time. Find activities you enjoy.

Walking, one of the best and easiest exercises, is a great way to get started. Besides its physical benefits, walking helps to reduce psychological tension. Walking 20 minutes a day, three times a week, is very beneficial. If you canʼt get away for that long, try to walk for as long as you can on however many days you can. Work walking into your life. Walk around the mall, to the store, or a nearby park. Walk around the block with a friend.

Tool #8: Learning from Our Emotions

It is a strength to recognize when your emotions are controlling you (instead of you controlling your emotions). Our emotions are messages to which we need to listen. They exist for a reason. However negative or painful, our feelings are useful tools for understanding what is happening to us. Even feelings such as guilt, anger, and resentment contain important messages. Learn from them, then take appropriate action.

For example, when you cannot enjoy activities you previously enjoyed, and your emotional pain overshadows all pleasure, it is time to seek treatment for depression—especially if you are having thoughts of suicide. Speaking with your physician is the first step. (See the FCA fact sheet Depression and Caregiving.)

Caregiving often involves a range of emotions. Some feelings are more comfortable than others. When you find that your emotions are intense, they might mean the following:

  • That you need to make a change in your caregiving situation.
  • That you are grieving a loss.
  • That you are experiencing increased stress.
  • That you need to be assertive and ask for what you need.
     

Summing Up

Remember, it is not selfish to focus on your own needs and desires when you are a caregiver—itʼs an important part of the job. You are responsible for your own self-care. Focus on the following self-care practices:

  • Learn and use stress-reduction techniques, e.g. meditation, prayer, yoga, Tai Chi.
  • Attend to your own healthcare needs.
  • Get proper rest and nutrition.
  • Exercise regularly, even if only for 10 minutes at a time.
  • Take time off without feeling guilty.
  • Participate in pleasant, nurturing activities, such as reading a good book, taking a warm bath.
  • Seek and accept the support of others.
  • Seek supportive counseling when you need it, or talk to a trusted counselor, friend, or pastor.
  • Identify and acknowledge your feelings, you have a right to ALL of them.
  • Change the negative ways you view situations.
  • Set goals.
     

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