Month: July 2022

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End of Life Stages Timeline

— What to Expect

By Angela Morrow, RN, BSN, CHPN

When a person is dying there is an end-of-life stages timeline that can help their loved ones understand what is happening to them.

The dying process usually begins well before death takes place. Sometimes, you can recognize the signs that a person is dying by the physical, mental, and emotional changes that are part of the end-of-life timeline.

Death is a deeply personal journey. Nothing about the process is certain or set in stone except for the outcome. There are many paths a dying person can take, but the stages at the end of life do have some similarities.

This article will go over the end-of-life timeline. You will learn about each stage of dying, starting with what happens about one to three months before death; during the last two weeks before death, and in the last few days of life. Understanding the signs of each stage of death will help you prepare and understand what is happening when your loved one is dying.

The End of Life Stages Timeline

The end-of-life timeline starts when someone is very ill and will not recover. At this point, your loved one may have been ill for a long time, or they may have just recently learned that the end is near. In either case, the dying process is set in motion.

Dying is a journey from the known life of this world to the unknown of what lies ahead. Each person starts on a mental path of discovery knowing that death will happen and believing in their own mortality. Ultimately, they will leave their body.

There are several milestones on the dying journey, but not everyone stops at them all. Some people may stop at only a few, while others experience each one and take their time throughout the process of dying. Sometimes, the process takes only days, while other people travel a road for months.

While the paths they take can differ, here’s where the dying process begins for most people.

End of Life Timeline: 1 to 3 Months Before Death

The dying process often comes into view about one to three months before death. Many of the experiences that take place at this first end-of-life stage are broadly common but the specifics can depend on the individual.

There are also social and cultural factors that shape a person’s dying experience—for example, gender roles can be a factor. Research has shown that men are less likely than women to openly talk about their mortality and end-of-life wishes. One reason might be that men find it more difficult to ask for help and want to avoid coming across as being “needy.”

That said, these differences are not necessarily unique to one gender identity; there are plenty of women who struggle to talk about their death and do not want their loved ones to feel “burdened” by caring for them during the dying process.

As a person approaches their death, their religious and cultural background also influences how they feel about the dying process. Depending on their beliefs, certain practices, rituals, and customs can be steps along the end-of-life timeline.

Mental and Behavioral Changes

As a person starts to accept their mortality and realizes that death is approaching, they may start to withdraw. They are beginning the process of separating from the world and the people in it.

During this stage, your loved one may say no to visits from friends, neighbors, and even family. When they do accept visitors, it might be hard for them to interact with you. In those moments, you may struggle with your feelings about them because you feel rejected.

This stage is also one of reflection. A dying person is thinking about their life and revisiting old memories.

Physical Changes

As the body starts to slow down, a dying person may have a reduced appetite and weight loss. This is actually OK because the body no longer needs as much energy. A dying person may start sleeping more and stop doing their regular activities—another reason why they need less nourishment.

The body chemistry is naturally altered during this end-of-life stage and that can cause a mild sense of happiness and well-being (euphoria).

The dying person may stop feeling hungry or thirsty at this stage. While this can alarm their loved ones, they are not suffering in any way by not eating; it is an expected part of the journey they are taking.

End of Life Timeline: 1 to 2 Weeks Before Death

The dying process starts to move faster in the last week or two of a person’s life. The acceleration can be frightening for their loved ones, especially if they are upset by the changes taking place.

As your loved ones’ death is approaching, you may want to “correct” them if they say things that don’t make sense but try not to. At this stage, it’s better to listen to and support your loved one.

For example, your loved one might say that they see or hear a person who died before them. In those moments, just let your loved one tell you about it. You might feel frustrated because you can’t know for sure what they are going through in those moments—are they hallucinating? Are they having a spiritual experience? The uncertainty can be unsettling but it’s part of the process. The best thing you can do is love them.

Mental and Behavioral Changes

During this stage of the end-of-life timeline, a person will mostly be sleeping. When they are awake, confusion and altered senses are common. It’s possible that a loved one will experience delusions, like fearing hidden enemies or feeling invincible. It can be hard for you to witness these changes, but it’s important that you remain supportive.

The dying person may have hallucinations at this stage. They may see or speak to people who are not there, including those who have already died. Sometimes, people feel that this is like the veil between two worlds lifting.

The dying person can be restless during this time. They may pick at their bedsheets or clothing and their movements and actions can seem aimless and make little sense to those around them.

Physical Changes

At this point in the end-of-life timeline, a dying person’s body is having a hard time maintaining itself. Your loved one may need help with just about any form of activity. For example, a person may have trouble swallowing medications or may refuse to take the ones they are prescribed. If they have been taking pills for pain, they may need liquid morphine now.

During this end-of-life stage, signs that death is near include:

  • Body temperature that’s a degree lower than normal (or more)
  • Lower blood pressure
  • An irregular pulse that may slow down or speed up
  • Increased sweating
  • Skin color changes, with pale or bluish lips and nail beds
  • Breathing changes (e.g., a rattling sound and cough)
  • Less or no talking
  • Sudden arm or leg motions

End of Life Timeline: Days to Hours Before Death

The last couple of days before death can surprise family members. At this stage, your loved one may have a sudden surge of energy as they get closer to death. They may want to get out of bed, talk to loved ones, or eat food after having no appetite for days or weeks.

You may take these actions as signs that a dying person is getting better, but the energy will soon go away. It can be hurtful to watch this happen but know that this is a common step within the end-of-life timeline. These energy bursts are a dying person’s final physical acts before moving on.

The surges of activity are usually short. The previous signs of being close to death return more strongly once the energy has been spent.
At this stage, a dying person’s breathing becomes more irregular and slower. Rapid breaths followed by periods of no breathing at all

(Cheyne-Stokes breathing) may occur. You may also hear a “rattling” sound as a dying person breathes.

These changes can be unpleasant to witness but you should try to remember that your loved one is not uncomfortable.

Your loved one’s hands and feet may start looking blotchy, purplish, or mottled. The changes in skin appearance may slowly go up the person’s arms and legs. Their lips and nail beds will turn bluish or purple, and their lips may droop.

At this end-of-life stage, a dying person usually becomes unresponsive. They may have their eyes open but not be able to see their surroundings. It is widely believed that hearing is the last sense to leave a dying person. Knowing this can remind you that it’s still valuable to sit with and talk to your dying loved one during this time.

When your loved one stops breathing and their heart stops beating, death has occurred. They have reached the end of their journey.

Summary

Many people wonder if they will recognize that a loved one is dying. There are often signs that begin a month to three months before death. Knowing these signs may help you prepare for your loved one’s death, and bring comfort to you as you face the physical and mental changes that happen along the end-of-life timeline.

Complete Article ↪HERE↩!

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Researchers Identify 8 Signs of Impending Death

Findings could help families prepare and aid in end-of-life care choices

By Alan Mozes

Researchers say they have identified eight specific physical signs that strongly indicate that someone with advanced cancer is entering the last days of life.

The investigators focused on telltale signs that a patient has, at most, just three days to live. The hope is that this information will help family members and other caregivers better handle an impending death, as well as be more prepared for choices that may have to be made during end-of-life care.

“I think the bottom line is that our study identified several classical signs that can be observed by the bedside by doctors, nurses and even family caregivers, which may help them to determine with confidence that the patient has entered the final days of life,” said study lead author Dr. David Hui. He is an assistant professor in the department of palliative care and rehabilitation medicine at the University of Texas MD Anderson Cancer Center in Houston.

He also said that “we believe these signs may apply to both cancer and even non-cancer patients, because these signs occur as part of the natural process of dying.”

Hui and his colleagues reported their findings in the Feb. 9 online edition of Cancer.

To compile their list, the researchers monitored physical changes that occurred just prior to death among more than 350 advanced-stage cancer patients. They were being treated at one of two cancer centers: one in the United States and one in Brazil. All of the patients were in an acute palliative (end-of-life) care unit.

Physical changes were noted twice daily, according to the study.

During the study time frame, more than half (57 percent) of the patients died. And in the end, the authors settled on eight indicators that seemed to most accurately predict imminent death.

Those included: an inability to close the eyelids; diminishing ability to react to visual stimulation; a reduced ability to react to sounds and words; facial drooping; non-reactive pupils; hyperextension of the neck (this causes the head to tilt further back when lying down); vocal cord grunting; and bleeding in the upper digestive tract.

“It is important to point out that only a small proportion of patients may have each of the signs before death,” said Hui, “although a majority would have at least one of the signs in the last three days of life. The presence of these signs strongly suggests that death will occur in the next three days. However, absence of these signs does not suggest that death will not occur.”

Some signs seemed to be more common than others, with some occurring among just 5 percent of the patients while others were seen among nearly 80 percent during the last three days of life, according to the study.

Hui also cautioned that there will always be exceptions to the rule, and his team’s list will not cover all situations. Exceptions, he said, would include cases of sudden death or when intensive care unit patients are breathing by means of mechanical ventilation.

Dr. R. Sean Morrison is director of the Lilian and Benjamin Hertzberg Palliative Care Institute at the Mount Sinai Icahn School of Medicine in New York City. He said that, while doctors are already very familiar with signs of impending death, the list could be very helpful for families struggling to come to grips with a disorienting set of circumstances.

“Within the palliative care community, this is very well understood,” Morrison noted. “And this is certainly not just about cancer. This would apply to anyone dying of heart disease, lung disease or even dementia, because the symptoms that are identified in this cancer population are almost universal for anyone approaching the end of life.

“But from a clinical perspective as physicians, I don’t think this list will prove terribly helpful,” he added. “Because what we’re talking about here is really people hours from death who really can’t respond or are not interactive or are essentially in a coma approaching death. So I would hope and expect that by this point a discussion of patient goals and family needs would have already taken place, long before, along with any decisions about blood tests and treatments.”

Still, Morrison said the list could be “helpful for the family, and for helping us guide families. Because one of the things that families wrestle with is how long do I have with my loved one? And we’re not always that good at predicting that. So this may help give families a time frame for knowing how long the vigil is going to be.”

Complete Article ↪HERE↩!

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Volunteering for a Jewish burial society showed me how to live a more sacred life

The work of a Chevra Kadisha is done without promotion or fanfare, and is solely for the benefit of the deceased

By Hannah Lebovits

The first time I touched a dead body was in a sanitized room inside a Dallas funeral home. I was stationed next to Ana’s toenails, with a small toothpick and a Q-tip. While firmly holding onto her foot, I silently cleaned away any dead skin, dirt or debris that might be found under her nails or between her toes.

Though Ana’s primary residence was several hours from the city, and she was not affiliated with any local synagogues, a burial plot in Dallas had her name on it. In Dallas, Ana’s family requested a Jewish burial service, including a plain, pine coffin and a ritual cleansing. The funeral home alerted the local Chevra Kadisha, the organization that prepares bodies in accordance with Jewish law, to perform the tahara or purification rituals, and, along with four other women, I volunteered.

Jewish death and Jewish life seem vastly different to me since joining the Chevra. Jewish life gets more and more public every day. Last year, an online Jewish organization paid for prime advertisement space in Times Square to fight antisemitism. Netflix offers Jewish experiences on demand, including the nuanced, scripted “Shtisel,” and the unabashed, reality-TV show “My Unorthodox Life.” Meanwhile, on Instagram, TikTok and Twitter, one can find countless accounts dedicated to informing the public about Jewish life and interfaith experiences.

Yet, while Jewish life seems to be increasingly visible, Jewish death rituals remain private, intimate and authentic. Narcissism and self-promotion are left at the entrance to the funeral home. Inside the tahara room, individual opinions, personal comfort and even your schedule are entirely secondary to the needs of the deceased. The experience is calming and comforting specifically because it is not about you. It’s a lesson for all of us who consider ourselves to be representatives of and in service to Jewish life.

If we can take a few moments to disconnect from the noise and selfishness of everyday living and instead focus on accountability — particularly in our interactions with those who may never repay us — we can maintain a certain purity of action in living an authentic Jewish life.

Prior to walking into the tahara room, I helped to prepare the casket. The first thing we realized, upon opening the box, was that there were not enough wood shavings to properly prepare her casket. Ana’s head was to be propped up on a pillow filled with wood shavings, and her body to lie on a sheet covering an arched bed filled with more wood shavings. We laid out the burial shrouds across the aron (casket) and waited for a funeral home manager to find more of this important material, but no additional wood could be found.

We asked her to keep some on hand for the future, set up what we had and hurried into the tahara room, unwilling to make the body wait for even another second.

After cleaning Ana’s nails and checking her body for any open wounds, I picked up a pot full of water. Starting with Ana’s hair, I poured the water from the pot onto her body as another member of the Chevra Kadisha washed her with a simple white linen cloth. We made our way down the right side of her body as another pair of women did the same on the left. Her body was cold to the touch.

Towels covered her body, and we lifted those towels only to reach a specific spot. Once the area was cleaned of any residual dirt or blood, we covered it again. Any bleeding that we had found during the process would be collected and buried in the casket with her.

I watched as her head remained elevated the entire time. Ana could be seen yet she herself could not see, and as such, we kept her face and eyes covered, out of respect.

Before washing Ana, I washed my own hands. In line with the ritual practice, I poured water from a cup onto my right hand, making sure the water spread from my wrist to the ends of my fingers. Then, I did the same for the left hand. I repeated this three times, in silence. After Ana’s body was cleaned, we washed again, replaced our gloves and filled three more buckets with water.

Ideally, Ana’s body would be entirely submerged in a mikvah. However, since that is not feasible in our community, we are required to pour water in a manner that will ensure that the flow does not stop, simulating a complete immersion. Ana’s body was completely uncovered as three women poured the buckets of water over her, beginning with her head and ending with her feet, making sure that the flow from the bucket was continuous. After the three women poured, we all proclaimed Ana’s purity, and one woman read the prayers. We then immediately covered and dried Ana’s body and began to dress her in burial shrouds.

Local traditions vary across places as different leaders (the “Rosha”) will follow specific customs they’ve been taught and have found to work. The practices followed by our Chevra include specific outlined rituals, local traditions and tikkunim, or “perfections.” A tikkun is a practice that assists in the performance of the ritual and serves as a reminder to the members of the Chevra that they must treat the body — which once held the soul and is now in transition — with the utmost respect.

One tikkun our Chevra keeps is placing a sign with the deceased’s Hebrew name in the tahara room, so that there is no time lost waiting to recall the name as we say the prayers. While dressing Ana, we turned the garments slightly inside out so that Ana’s body would not have to be moved more than necessary as we pulled them up her body — another tikkun we performed.

Complete Article ↪HERE↩!

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What to expect when someone is in the last few days of life

The dying process is unique to each person, however there are a few common changes that happen to almost everyone when they are in the last days of life. Some of these might look distressing, but most of the time the person is not in any pain, and they are just a normal part of dying.

Loss of appetite

When someone is at the end of life they will typically have less appetite, as their need for food and drink reduces. If they stop drinking and their mouth looks dry, this does not necessarily mean they are dehydrated.

It might be too much effort to eat and drink. If this is the case you can offer sips or small bites, provided they are conscious and can still swallow. You can also help someone with a dry mouth by:

  • offering a drink through a straw (or from a teaspoon)
  • moistening the mouth with a damp sponge – special kinds of sponge are available for this purpose (the person may bite on this at first, but keep holding it, as they will let go)
  • placing ice chips in their mouth
  • applying lip balm

Changes to breathing

As a person becomes less active towards the end of their life, they need less oxygen. Breathing may become shallower and there may be long pauses between breaths. They might yawn frequently, as this is a natural response to draw more oxygen into the body.

Their breathing can make a noise because they are not able to properly re-absorb fluids in their chest or throat, which can cause a rattling sound. This may be upsetting to hear, but it doesn’t mean they are in distress or need oxygen. It can be a bit like snoring – it affects those who hear it more than the person who is making the sound.

If their breathing is very loud, it may be helpful to change their position so they are on their side, as long as this doesn’t disturb them. You can ask to be shown the best way to move them – ask about sliding sheets.

The doctor or nurse may also suggest medication to reduce the fluids in their chest or throat. This is not always needed, and it does not always make a difference.

Anxiety can cause their breath rate to increase a little. Breathlessness can be frightening but simply sitting with them so they know you are there can help.

Needing more sleep

They are likely to spend more time sleeping, and will often be drowsy even when they are awake.  They may also drift in and out of consciousness. Some people become completely unconscious for periods of time before they die – this could be for a short period or as long as several days.

They may seem less interested in what is going on around them, and have less energy to take part, but this does not mean they can’t hear you.

You can carry on speaking quietly to them. You could also try letting them know you are there in other ways, for instance by holding their hand, reading to them, or playing their favourite music.

Restlessness

Some people can become restless in the last few days of life. They will usually become calm again before they die.

They may appear confused and not recognise familiar faces, and even see or hear people or things that are not actually there – for instance, they may see pets or people who have died.

While this can be upsetting it is not a sign that they feel differently about you. This can be caused by medicines or changes in the chemical balance of the brain, or as a result of drifting in and out of sleep so they are unable to clearly distinguish between what is real and what is not.

If they are agitated, often just sitting with the person can help to calm them down. You can also help by:

  • speaking clearly and audibly
  • reminding them who you are (and being prepared to do so repeatedly)
  • keeping their surroundings calm with few changes in noise level
  • trying not to correct them if they say something wrong, or insist on them getting things right, as this may be upsetting for you and for them

Agitation could also be a sign of constipation or difficulty passing urine. Ask the medical team if you have any concerns so they can rule out any underlying causes and if necessary prescribe medicine.

Changes to skin

Changes to the metabolism of the dying person can cause their breath, skin and body fluids to have a distinctive smell similar to that of nail polish remover. If a person is dying from bowel or stomach cancer, this smell might be quite strong.

The person’s hands, feet, ears and nose may feel cold. Their skin may also become mottled and blue, or patchy and uneven in colour. Occasionally, a person’s hands or other body parts may swell a little.

This happens due to reduced circulation and is normal. As the body’s functions slow down, blood may coagulate or pool, particularly at the base of the spine, which can cause patches that look like dark purple bruising. This is not usually painful or uncomfortable. Gentle massage can help, ask the nurses to show you how to do this.

Losing control of bladder or bowels

When someone is in the last few days of life the muscles in their bladder and bowels relax, which can cause them to lose control of their movements. This may be distressing to see, and they might feel embarrassed.

You can ask a nurse to show you how to keep their bed clean and comfortable. You can also ask for incontinence pads or a catheter – a long thin tube that can be put into a person’s bladder to drain urine.

It is also common to have fewer bowel movements if they are eating less, and urine may get darker as they drink less.

Complete Article ↪HERE↩!

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Health-care providers and MAID

— The reasons why some don’t offer medically assisted death

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Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

David Lametti, Minister of Justice and Attorney General of Canada, delivers a statement on Bill C-7 on Parliament Hill in Ottawa in March 2021. The bill removed the criteria of a reasonably foreseeable death from MAID eligibility.

As an end-of-life researcher and registered nurse, I investigated this question with the support of my thesis committee. That research highlighted the complex and interwoven reasons why health-care practioners may not participate in MAID.

These factors can be divided into internal and external factors, but it’s also important to recognize that there are conscience and non-conscience-based factors that influence non-participation.

Internal factors

Several personal, or internally originating, factors influenced non-participation. These included a general discomfort in caring for dying patients as well as the provider’s previous personal and work experiences related to death and dying. Also, MAID did not align with some practioners’ approaches to end-of-life care.

Other factors that influenced non-participation included practitioners’ views of their professional duty. MAID did not align with some practitioners’ faith or spiritual beliefs, and some reported they could not imagine being at peace with the decision to participate in medically assisted dying.

Health-care practitioners also considered how they were likely to respond emotionally to participating in MAID. They had concerns about the future impact of MAID participation in terms of their potential risk of post-traumatic stress disorder and burnout.

External factors

  • Health-care system factors: The health-care system influenced non-participation. This included working for an organization with an institutional conscientious objection to MAID and the uncertainty of working within a rapidly changing legal landscape in terms of MAID regulation. There were also concerns about adequate access to alternatives to MAID, such as palliative care and chronic care support at home. Some nurse practitioners reported that they did not participate in MAID because of limiting job or practice descriptions at their current employer or a lack of billing codes that would enable them to be paid for these services.
  • Community factors: Reasons for non-participation also included gauging the “community conscience,” perceiving a lack of openness in end-of-life discussions and the dominant religious beliefs of the community. Health-care practitioners were concerned about the impact of having to reduce or cancel other services in an already busy practice to make the time to provide MAID care to a single patient. They were also unsure if or how culture influenced the patient’s perception of MAID, or the patient’s perception of them as health-care practitioners if they participated or if participation would alter the community’s trust in them.
Cropped image of a person in a white coat standing behind a seated older person, holding their hand
The health-care practitioner-patient relationship influenced non-participation. A long relationship with the patient could make participating in MAID uncomfortable and challenging.
  • Practice factors: For some health-care practitioners, their decision to not participate in MAID was influenced by a lack of policy and program knowledge or skills to participate in the MAID assessment or provision. Another reasons was adequate pay for the time and overhead costs involved. Others said they lacked understanding about the optimal care model for MAID (such as whether MAID is provided by family medicine practitioners, end-of-life care practitioners or MAID teams). Others identified that MAID was outside their clinical interest and practice strengths.
  • Visibility factors: How MAID participation would be viewed by colleagues, clinic staff and patients also influenced the non-participation of health-care providers. This included fear of colleagues’ disapproval, fear that participation would harm patient relationships and their relationship with their faith community and a fear that participation would be interpreted as giving up on patients.
  • Risk factors: Health-care providers contemplated the risk to themselves, their practice and their families. Specifically, the risk associated with professional discipline if the patient or patient’s family disagreed with their assessments, the risk of colleagues making their professional lives difficult and the perceived risk of personal physical harm or violence to themselves or their families.
  • Time factors: Concerns about competing clinical demands, time-limited appointments that do not accommodate end-of-life conversations and lack of time to offer quality MAID care influenced non-participation as well. Some health-care providers did not wish to take on new practices at their current career stage (for example, close to retirement) and others noted a lack of time to take continuing education in MAID.
  • Patient’s family factors: Other factors that influenced non-participation in MAID related to the patient’s family. Health-care providers expressed concern that participation would impact the care provided to other family members and that there was a lack of support for the family before, during and after MAID. They also considered the potential challenges of inter-family conflict around the patient’s MAID choice and the impact of the MAID death on future family dynamics.
  • Patient relationship factors: Another factor was the health-care practitioner/patient relationship. A long relationship with the patient could make participating in MAID uncomfortable and challenging. Others noted that a long history with a patient would support open discussions about their reasons for not participating in MAID.

Support for health-care practitioners

My research outlines a model of non-participation in the formal MAID processes. In terms of conscience and non-conscience-based factors, it’s vital to differentiate between a conscientious objection to MAID and non-participation in MAID because health-care practitioners require different support for these.

Steps that might support health-care practitioners who are considering participating in MAID include clarifying regional models of care, which vary between provinces and territories.

Practice-focused MAID education could include not only policy and legal aspects but also pragmatic issues such as obtaining medications and administrative requirements, as well as discussions about relevant factors like communication skills and religious knowledge.

Recognizing the practice issues, time and relationship investment required to provide MAID, and developing fair remuneration policies for health-care practitioners who provide it, may support more participation in MAID.

Supporting health-care practitioners will be vital to a sustainable, healthy health-care system for Canadians.

Complete Article ↪HERE↩!

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Who is most likely to use medical aid in dying?

Data from each of the 5,329 patients across the US who died from medical aid in the 23 years after Oregon became the first state to legalize shows well-educated, white patients with cancer dominate the group.

“Although MAID will likely never account for more than a small portion of deaths, it is becoming more common in the states where it is legal, and it’s currently on the legislative agenda of another 14 states,” says Elissa Kozlov.

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More than 72% of patients who died with medical aid had at least some college education, more than 95% were non-Hispanic whites, and nearly 75% had cancer.

“We don’t know if these numbers reflect genuine, underlying differences in group preferences or disparities in how laws are written or services provided,” says Elissa Kozlov, an instructor at the Rutgers University School of Public Health, and lead author of the study in Journal of the American Geriatrics Society.

“But such large differences in utilization are always a red flag that demands further investigation, and if that investigation finds disparities that make it harder for some groups to access desired medical services, we need to correct them.”

“Many doctors will not participate in MAID, and many who will don’t necessarily advertise the fact.”

The sexes were relatively evenly represented—53% male, 47% female—but medical aid in dying (MAID) users naturally skewed much older than the population at large. Nearly 60% of the people who died with medical aid were between ages 65 and 84. Another 16% were 85 years old or older, while 8% were 54 years old or younger.

One major barrier to many would-be users is cost. MAID is now permitted by eight states and Washington, DC, but the federal Medicare program, which is the primary insurer of Americans 65 years old and older, doesn’t pay any costs associated with MAID.

Those costs can be considerable, Kozlov says. States that allow MAID typically require two doctors to certify the patient will die within six months. There’s also the expense of buying the medications prescribed for MAID, which are often not covered by insurance and can cost up to $3,000.

Another major barrier is finding a doctor who will provide the service.

“Many doctors will not participate in MAID, and many who will don’t necessarily advertise the fact,” Kozlov says. “You have to be well connected within a network of doctors or skilled in researching such matters, and that’s one possible explanation of why well-educated people are disproportionately represented in our findings.”

Many MAID users previously had received hospice care. Still, the overwhelming majority—90%—chose to die at home, and nearly as many—88%—told their families of their plans.

“Further research in this area is necessary because although MAID will likely never account for more than a small portion of deaths, it is becoming more common in the states where it is legal, and it’s currently on the legislative agenda of another 14 states,” says Kozlov.

Complete Article ↪HERE↩!

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Disenfranchised grief

— Why mourning an estranged relationship is completely valid

Yes, you can grieve things other than a death

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Grief is never straightforward, but there are some losses that can be harder for others to understand.

Estrangement is its own kind of loss and feeling grief over it is perfectly legitimate and normal.

But to many, that loss isn’t easily quantifiable because it wasn’t caused by death.

What happens if, by the standards of wider society, your grief isn’t seen as viable?

This is what’s typcally known as ‘disenfranchised grief.’

Noel McDermott, a psychotherapist, explains: ‘Disenfranchised grief is a term used to describe situations in which, for some reason, the grief a person is feeling is deemed illegitimate. The reasons for the illegitimacy might be social, cultural and political or might be mostly driven by internal belief systems. 

‘For example, it may be we tell ourselves the relationship we had to the person who has died is too distant and that it’s somehow wrong of us to feel loss, or we would be somehow stealing another person’s space to grieve, such as in the event of the loss of a grandchild, or the loss of a spouse’s parent.

‘Or maybe we tell ourselves we shouldn’t be feeling grief because the person we lost was someone we were estranged from, by choice or circumstance.’

Integrative counsellor Billie Dunlevy says some other examples are cases where the relationship is stigmatised, the way in which the person died is stigmatised, the way in which someone grieves is stigmatised, and non-death losses.

She adds: ‘Estrangement is a non-death loss, and it also can sadly be the case, that the person grieving is not really recognised as a griever.

‘When someone makes the choice not to speak to their mother anymore, for example, there can be a sense that any feelings of grief they carry around estrangement do not have anywhere to go.

‘They may feel that they do not have any right to grieve or miss someone they walked away from. This is disenfranchised grief.’

Unfortunately, estrangement is often judged and misunderstood, and unsolicited advice and opinions abound.

Billie lists examples such as:

  • ‘Why don’t you just try and make it work?’
  • ‘You only have one (insert relative here); don’t you feel bad?’
  • ‘You’ll regret this when they’re old.’
  • ‘If you feel sad about it, why have you blocked them?’

Indeed, a key issue with disenfranchised grief is the lack of understanding you can be met with from others when you try to share your loss with them.

‘This is where the disenfranchisement occurs,’ says Noel.

‘It’s not that we don’t feel the loss, it’s that we are cut off from (or disenfranchised from) legitimate forms of expressing our grief – for example, by attending the funeral, or by having others automatically understand we are grieving and supporting us, or by giving ourselves permission to feel the loss.’

When it comes to estrangement, it’s important to remind ourselves that it’s OK to lament the loss of someone who did you wrong.

‘The truth is estrangement is a living loss,’ explains Billie. ‘Regardless of the quality of the relationship, the loss can be significant when we disconnect from close family.’

She adds: ‘The grief often includes wishing and longing for things to be different and finding it hard to come to terms with the reality of the family dynamic.

‘We need to understand that grief is not a sign of us colluding or even forgiving someone who did wrong to us, but that it is a sign we are fully human,’ says Noel.

‘Our grieving is expressing our individual humanity, not what we think about the person. At that point, we can let ourselves feel and then heal. This is true no matter who initiated the estrangement.

‘Grief is thought of, anthropologically and historically, as the indicator of the beginning of true human experience. In anthropology, the beginning of human culture is often associated with rituals and practices to decorate the graves of lost loved ones.

‘So, while we may be disenfranchised from current norms of public grief in a particular situation, we are not disenfranchised from our humanity, and we can create meaningful ways of acknowledging our loss.’

How to cope with grief over an estrangement

Find acceptance and support

Billie suggests three things; you should find a place where the complexity of your grief is understood, seek support from others who’ve gone through something similar, and remind yourself that you’re worthy of time the time and space to grieve.

‘Living grief comes in waves,’ she says. ‘Sometimes people can feel fine and other times it throws them off balance, and they need support.

‘It is not a straightforward process to make peace or come to a place of acceptance of who your family is. Therapy offers an experience where someone walks beside you as you work stuff out. It does not have to be one more thing you have to do alone.

‘Look for other people who have similar experiences. Online support groups and forums can be a good place to start. You may also find, if you feel able to be honest about your situation, that you could know people who are living with the same struggles. Sharing deepens are feelings of connection, so we feel less alone.

‘And give yourself permission to grieve – the kind of allowances and understanding that people are given when someone dies might be what you need sometimes – things like leaving a social event earlier, spending time alone and taking mental health days off from work.

‘If there are specific dates that are hard for you, think about how you can support yourself around them by offering yourself compassion and lots of self-care.’

Honour your feelings

Noel says many people find ways to honour their feelings through rituals, describing them as: ‘the container of those feelings that occur when we lose meaning.’

‘Religion provides this for a lot of people and if you’re religious you can access it to give meaning to your loss,’ he adds.

‘For those who are not religious, there are methods used in therapy – for example writing a letter to the person you’ve lost, reading it to your therapist or someone else trusted to share your feelings and then keeping the letter, or ritually letting it go for example through fire.

‘We can create personal and private rituals that we repeat at anniversaries associated with the relationship lost. Is there a song, an event, or a place associated with the relationship that you can engage with for a period of mourning on a regular basis?

‘Remember, in this, what you’re honouring is your own capacity to feel pain -which is your own capacity to feel love, and that is important for you to celebrate.’

Find somewhere for this love to go

Billie also says volunteering and creating your own chosen family can help, explaining: ‘As an adult, you can choose who you spend time with and what relationships to nurture. Find somewhere for your love to go.

‘Make friends and connections that fill you up, where you do not have to pretend or behave a certain way to feel like you belong.

‘We can all get caught up in our heads at times and forget about the bigger picture of our communities. We need each other, and giving back to others is not an entirely selfless act.

‘There are lots of positive mental health and wellbeing effects associated with volunteering. You can choose a cause related to your grief or something completely different. Giving your time to others in need can form a great part of your toolbox for coping.’

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