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!

Researchers Identify 8 Signs of Impending Death

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

By

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!

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!

Cancer treatment took my mojo. Hospice gave it back

The author with her grandchildren, Lily and Ella, at Sofra in Cambridge, June 2022.

By

Eating is one of my greatest pleasures, and it was the first thing to go. Everything I put in my mouth tasted metallic. My taste buds were distorted. The nausea wouldn’t go away with any medication, not even marijuana. I was in starvation mode.

When the cancer had returned after 23 years to finish its job, I thought the targeted hormonal therapy wouldn’t be as drastic as the chemotherapy I had the first time.But it was worse. The daily pill I was prescribed to take indefinitely — or until such time when it no longer worked — subverted my bodily functions.

My blood counts plunged to critical levels. I had to have two pints of blood monthly to bring up the hemoglobin to carry more oxygen through my body. My liver enzymes rocketed, indicating toxicity. By January this past year, I was in bed all day, getting up only to use the bathroom.

I felt like I’d lost my mojo. My spark. My life.

In March, a nurse practitioner visited my infusion room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider transitioning to hospice. I had no clear picture of what hospice was, except that it’s where you go when you are about to die. But I trusted my medical team’s judgment.

The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice. (Courtesy Grace Segran)
The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice.

I went into hospice. And to my surprise, that’s how I got my mojo back.

I was taken off all cancer drugs and cared for at home by the hospice medical team. They also supported my daughter, Elizabeth, and taught her how to care for me.

Elizabeth came by with newborn baby Lily, every day, and took care of my personal needs. Then we would go out for a lunch or at teatime, or take a drive to nearby towns. The short wobbly walks to the car while holding on to her arm soon became more steady, and I could walk further as my muscles became reconditioned. I began to pick at my food rather than reject it outright. A month later, I no longer needed the electric cart in Target, or for Ben, my son-in-law, to lift me into the car seat or out of the dining chair.

About six weeks after stopping the drugs, I woke up and I wanted an egg salad on sourdough bread and iced oat milk latte. For lunch, I wondered if we should do the dim sum carts at Joyful Garden. Or rasam and thosai at Dosa n Curry. We should definitely stop at Sofra on the way back for lemonade and tahini shortbread. The nausea and aversion for food was gone. I was delighted to be eating again and entered into it with abandon, especially in the company of family and good friends.

The Segran women -- from left, Elizabeth, Grace, Lily and Ella -- at a church park party, June 2022. (Courtesy Grace Segran)
The Segran women — from left, Elizabeth, Grace, Lily and Ella — at a church park party, June 2022.

With all the lunches I was booking with friends whom I’d not seen for months, I called Laura, my hairdresser, for an appointment. My hair had grown unruly now that the drug wasn’t curtailing its growth.

“You remember, right? Not too short and lots of texture,” I told Laura. When I got home, I dug deep in the closet for summer dresses and shoes. I had places to go!

I took baby steps towards traveling, another love of mine. Over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to veer towards the airport after that and venture on to Chicago and New Orleans.

I started writing again. I’d scoured the internet but couldn’t find anything on first-person accounts about dying and hospice (always written by caregivers), so I wanted to write about that. And here I am.

My life is not perfect. I don’t walk nine miles a day as I did pre-cancer. I limp badly, and it’s a good day if I can make a quarter mile. I’m in bed for days after an overnight getaway. I don’t feel like seeing anyone some days. But I have the support of the beloved hospice team who comes to my home to help with my disabilities and take care of infections and pain, enabling me to live the life I want for as long as I can.

The window will close at some point, and I will go into decline as the cancer takes over. But I’m grateful for this interregnum. Hospice care has given me back my life, for now. I don’t know when the window will close — none of us do, really — but I’m cherishing every moment while it lasts.

Complete Article HERE!

What to do when someone receives a terminal diagnosis

This step-by-step guide has advice for what you can do when you or someone close to you has been given a terminal diagnosis, and the ways you can access hospice care.

How you might feel

Hearing that an illness cannot be cured can be a shock, and it can be frightening.

It is common to feel lots of different emotions, including numbness, shock, anger, sadness and even denial.

Whether you have a terminal diagnosis or are caring for the person who has, you don’t have to go through this alone as there are people and services available to support you.

What to do next

After receiving a terminal diagnosis, there are two important things you should do next:

  • Make an appointment with your GP to find out what support is available. If you are the person with the diagnosis, consider whether you want to take a family member or close friend with you, or would rather go alone. You might be feeling lots of emotions which can make it hard to take information in.
  • Make contact with your local hospice to find out what support they can offer. Their staff are specialists in end of life care and will help you understand what you are facing, and suggest appropriate care. Hospice care is free for patients, their carers and family members.

If someone living at home receives a terminal diagnosis 

If you think hospice care could be helpful for yourself or the person you are caring for at home, contact a GP or district nurse to discuss your situation and ask if they can refer you to the local hospice.

Some hospices can take self-referrals, so it might be worth contacting them directly to ask about this.

Once you’ve spoken to a doctor or the hospice, the following things will usually happen:
The doctor will arrange a health needs assessment to make sure the right access to care, support and equipment is provided.

Equipment to make things more comfortable and safe might be necessary. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available – ask the GP or nurses about this.

Talk to an occupational therapist about what equipment you might need. A physiotherapist or occupational therapist can also help with things like breathing difficulties.

If someone in hospital receives a terminal diagnosis

Many hospitals have access to a palliative care team who can provide advice and support.

  • Ask your nurse or doctor if you can be referred to the hospital’s palliative care team
  • The palliative care team can help with a referral to the local hospice so that you can get support from the hospice when you leave the hospital.

What do I do now?

Hearing the news that someone you love, or a friend of yours, has been diagnosed with a life-limiting condition will be a real shock.

This video is intended to help you support them, and find out more about what will happen next. It’s important to know that you will not be alone. There is help out there not just to support and care for your loved one, but for you as well.

Complete Article HERE!

How Death Gives Meaning to Our Lives

In her new book, Alive Until You’re Dead, Susan Moon helps us confront our fears around death and shows us why we should be grateful for our own mortality.

Susan Moon’s new book, Alive Until You’re Dead, is out now with Shambhala Publications.

by Alison Spiegel

The subtitle of writer and lay Zen teacher Susan Moon’s latest book may be “Notes on the Home Stretch,” but the wisdom on aging, and more to the point, death, in Alive Until You’re Dead is important for readers of any age. Weaving in personal stories, many about confronting the deaths of close friends, Moon turns her lived experience into tributes and guidance for facing mortality. She also brings a lightness to the subject that so many people fear above all else, but that Moon says actually brings meaning to our lives. Tricycle caught up with Moon to hear more about the intention and writing process of the book, and for further advice on facing death at any stage of life.

Why did you want to write Alive Until You’re Dead: Notes on the Home Stretch? I wanted to write about my ongoing concern with what it means to be mortal and the idea that our condition of mortality and impermanence, which we are constantly fighting against, actually gives us life. Death is very hard and painful but it’s also what gives meaning to our lives. I really wanted to talk about how we actually can be grateful for our mortality, and that the fact that we’re going to die gives us the opportunity to make our life meaningful.

You wrote this book during the pandemic. How did that unique time impact your work? I think of it as my pandemic book, in a sense, because the pandemic provided me time and space and simplicity of life to write. I’ve been on writing retreats, I’ve been to writers’ residencies, and weirdly, this horrible tragedy was also kind of a perfect writer’s retreat for me. But at the same time, I think all the tragedy and fear added to the relevance of my subject in a way. I have to add that I’m grateful to my sister and brother-in-law who live with me and who supported and encouraged me as this was going on.

Early in the book, in a story about a friend of yours who died in the hospital after suffering a stroke, you say that “the Grim Reaper metaphor is all wrong.” Can you explain what you mean by that? Death is not one separate thing that’s coming after us. In Buddhism, birth and death are kind of conceived as a hyphenated thing. Life is the realm of birth and death, and there’s a sense that before we were born into this body, and after we leave this body, there’s this other realm of the absolute, which is a mystery to us. People often worry about what will happen to them after they die, but we never think about where we came from before we were born. We don’t even think about that as a parallel thing. 

Though you don’t shy away from the hard parts of aging, you also describe the upsides. Referencing a dharma brother who gave a memorable talk at Berkeley Zen Center, you write, “In his old age, it came naturally to him to put himself aside and not think about what he needed all the time.” How have you experienced this? It’s about letting go of self clinging. I’m not building a life anymore so there’s some freedom there to attend to the needs of others, like my own children and grandchildren. How can I just be present with loved ones? I love the example in that essay when the man said when he was playing with his grandson, and they would build a tower, his grandson would knock it over again and again, and they would just laugh and build it again. You don’t have to worry about building a tower that stays up.

But letting go of self-clinging is appropriate for anyone at any stage of life. If you’re grasping for your own happiness at the expense of others, that’s not going to bring you happiness. I really feel that the path to joy is to let go of self-clinging in whatever way you can, and I think Buddhist practice has been helpful for me in that. But there’s many other routes, like being in community and continually remembering that we’re all in this together, we’re all interconnected, and your happiness isn’t separate from anybody else’s happiness.

“The fact that we’re going to die gives us the opportunity to make our life meaningful.”

Throughout the book you reference beautiful moments with your grandchildren, who you connected with frequently over Zoom during the pandemic. These stories speak for themselves, but you also talk about the term “grandmother mind.” Can you explain what that means? It’s connected to letting go of clinging. Dogen uses the phrase when he tells a young male monk, who is different from a grandmother in every possible respect, that he won’t be able to have a mind of compassion and be a true Buddist practitioner unless he can develop “grandmother mind.” Dogen is speaking, I believe, about what he calls “the mind of great compassion.” So it’s that spirit, but I think as I’m using it, it’s also about a certain kind of love. If you’re not one of the grandparents who are raising your own grandchildren—an amazing thing that a lot of people are doing—and you’re able to just be a grandparent and not be responsible for all the hard parts, the kind of love that you can have for your grandchildren is unencumbered, unconditional. I see “grandmother mind” as an obligation to apply that feeling to all children. All of us need to have “grandmother mind” about children.

On the subject of death, you say, “When I deliberately consider my own death, I feel more alive,” and you offer some contemplations on death. Could you describe one of them? One that pops into my head—it’s not harder or easier, or more important or anything—is walking in cemeteries. To walk in a cemetery, and to actually look at the gravestones, read the names and think of all these people who have died, to look at the dates and think about the generations, gives me a sense of how there’s a flow of time and generations. For some reason I’m comforted by the thought that I am a leaf in the generations of leaves that keep turning over. I’m part of the turning over. There are many people who were born and died before me and hopefully there will be many who are born and die after me. I’m just one person and I’m not all that important. It’s just amazingly fortunate that I should be walking there, alive and looking at some bird singing in a tree, and life is going on. It’s the same feeling I get from looking at the stars in the sky and thinking of the vastness of the universe, or by reading about physics or cosmology. It’s the idea that there’s this vastness of time and that my life is just a little blink, and I don’t even know what part of the great cosmic consciousness my life is, but it’s a miracle that I have this consciousness in this one little tiny person on the planet. Here I am, and what a great miracle.

Do you think it’s wise or essential to prepare for death? What about preparing for the death of loved ones? When I think about it as a practice myself I resist it because it feels unnecessarily harsh. But should we prepare for the greatest moments of suffering? What I realized when I was writing this book—and I realized it before when thinking about my own loved ones, and particularly my children—is that accepting my own death is a hard job, but accepting that the people I love will die is even harder. Having people leave you is terrible, and then the worst possible fear of all would be to have your children die. I can’t imagine anything worse. I remember when I first became a mother, all of a sudden when I read the newspaper and the war in Vietnam was going on, I would see these pictures of children in the war and the whole thing took on a different meaning. It was much more personal to me, and it became unbearable. It’s the same even now, when I think about the war in Ukraine and the children there.

I think preparing for the death of loved ones is something that one can do. You can prepare for the death of somebody who is old, where the death won’t be such a tragedy. You can just try to appreciate the person and have so much gratitude for this person being in your life. You can try to help them see that their life has been full and rich and help them find some peace. And for children, take as much joy as possible in what’s going on. Don’t let fear rob you of your joy.

I also think that we can trust that sometimes people who are dying find a way to accept what’s happening. Maybe they’re in pain, maybe they want to be released, but it’s important to know that while your pain and your loss is so real and acute, you don’t have to take on their suffering, because you don’t really know what they’re suffering is.

A friend of mine, who I loved very dearly, died of cancer in 2018. I miss her terribly. She was a Buddhist, and she knew she was dying for quite a long time. At first she was still functioning well and then she needed to care, and I was one of the people who took turns to help her at home, making meals for her and things like that. Then she was in some pain and I said, “How do you do this? How do you tolerate this?” She said, “I just say to myself, ‘This is how it is right now.’” This is how it is right now. That became a kind of mantra for me that I bring into a lot of other situations in my life. It’s about being present in the moment, accepting things as they are and then moving from there. It’s not resigning yourself, but being present with things before you go on to the next thing. It’s knowing, thanks to impermanence, that things won’t stay this way, for better or worse. I think that is very helpful.

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Why Some Referred Patients Never Make It to Hospice

By Jim Parker

Hospice referrals appear to be going up. But many patients who get the referral never receive the care due to low health literacy and social determinant of health factors.

Among patients who received inpatient discharge instructions indicating hospice, nearly 1 in 10 did not enroll within 30 days of leaving the hospital, according to recent research from Trella Health. The company used data from the last quarter of 2020 and the third of 2021.

This trend held despite over all growth in the number of individuals who had received discharge instructions to enter hospice, according to Carter Bakkum, senior data analyst for health care insights at Trella Health.

“When the [hopital] patient is discharged, thosewho have instructions to seek hospice are making up a greater percentage of that pool,” Bakkun told Hospice News. And that means that the the knowledge and awareness of hospice care is growing.”

But there remains a gap in the number of people who receive those instructions and then adhere to them.

Any number of considerations can play into this, including patients’ choices, family input, cultural belief about the end-of-life, among others. But systemic issues also exist.

One of thos issues is poor health literacy, according to Kenneth Griffith, assistant professor of health policy at Vanderbilt University.

“I have a Ph.D. in health services research, and I still find a lot of medical instructions confusing. So I can only imagine what it’s like for folks who don’t do this kind of work every day,” Griffith told Hospice News. “Some hospitals have have reengineered their discharge processes to help put instructions in lay language, which is especially important for older, disabled adults. But this is definitely still not the norm.”

Health literacy is the degree to which individuals can obtain, process and understand basic health information and services needed to make appropriate health decisions, according to the Institute of Medicine. A health illiterate patient may have a strong overall ability to read or have an advanced education but have a limited understanding of information specific to health care.

This perspective is backed by other research. In general, patients who have poor health literacy are less likely to enter hospice care, a study in the American Journal of Hospice & Palliative Medicine found.

Delays in routine care can also adversely affect referrals and adherence is, often due to a range of unaddressed social determinants of health.

Some patients delay or cancel health care appointments because of insurance status, affordability, transportation difficulties, or a lack of social support, according to Griffith.

“You might want to receive your post-acute care as instructed, but you don’t have anyone to take you to your appointments, Griffith said. “Patients could face a lack of transportation access. Maybe you want to go, but it requires transferring between multiple bus lines. There just might not be a lot of options in your area. Especially if you are you a frail or you are a disabled, that can just be very challenging.”

Health care organizations have taken some strides towards addressing social determinants of health, though that work is not over.

Case in point, the U.S. Centers for Medicare & Medicaid Services (CMS) as of 2020 allows Medicare Advantage plans to cover supplemental non-medical benefits, including transportation and food services and some home modifications, among others.

While offering these benefits is optional for MA plans, a rising number are embracing them. As of 2021, 67% of individual plans offered support related to meals, as well as 69% of special needs plans, according to the Kaiser Family Foundation.

In addition, about 38% of individual plans covered transportation benefits. Among special needs plans the proportion was 87%.

Value-based payment models like Medicare Advantage provide more opportunities to address social determinants amd adherence to discharge instructions that the fee-for-service system, Griffith told Hospice News.

“Our health system doesn’t incentivize the type of care coordination that we might need. That’s the unfortunate nature of having a fee-for-service health system like we do,” Griiffith said. “If you are a health system getting a capitated payment on a patient, you have a much greater incentive to worry about what’s happening after the patient is discharged — especially if you have if you have the financial risk.”

Complete Article HERE!