— For patients in hospice, spiritual care plays an important role in offering comfort to them and their loved ones. Just like with physical or emotional pain, spiritual pain can cause hospice patients to have anxiety or concerns as they near the end of their lives. Thankfully, hospice chaplains are available to help patients and their families find spiritual healing and comfort.
What is a chaplain’s role?
A chaplain is a part of the hospice patient’s multi-disciplinary care team that also includes physicians, nurses, LPNs, CNAs, social workers and more. A chaplain’s job is to walk alongside patients as they navigate their spiritual journeys at the end of life. Because chaplains aren’t tied to a particular church or religious background, they are focused on meeting patients where they are spiritually and providing the type of comfort and care each patient needs.
This typically involves performing an initial assessment with each patient that helps the chaplain understand their beliefs, church background, faith background and more. This allows the chaplain to find out what is important to the patient and how they can best support them, no matter their religious beliefs or denomination. It also allows them to connect the patient with other religious leaders, such as priests or ministers, who can provide religious-specific support.
Chaplains as listeners
One of the most important parts of a chaplain’s job is listening. They will often spend a lot of time with their patients going through a “life review” — which involves listening to the patient as they talk about their past, memories, accomplishments, interests, etc. This life review allows the chaplain to enter the patient’s world and gives the patient the often-therapeutic experience of sharing stories about their lives.
Through the life review, the chaplain builds a trusting relationship with the patient that gives them the foundation they need to better provide spiritual support. It also gives the chaplain an idea of things in the patient’s past that they may be able to help with and relieve any lingering negativity.
Chaplains as comforters
Providing comfort and easing any anxieties a patient may have as they near the end of their life is a big part of a chaplain’s role — and it looks differently for every person.
Religious patients may find comfort in scripture, prayer or sacraments such as baptism or communion. Other patients may have questions about spirituality if they haven’t been religious before but are looking for peace. Patients who are not faith-connected may want non-religious support to ease their minds in their final days, such as being reminded that their loved ones are being taken care of. Chaplains also often care for the family members of hospice patients, helping spouses, parents, grandparents, etc., find peace and hope in saying goodbye to their loved one.
For chaplains, it’s all about looking for signs of spiritual pain or distress and finding ways to relieve that anxiety and help someone find comfort in their hospice journey.
Chaplains as planners
One way chaplains can help patients and their family members find peace and comfort is by aiding in the funeral process. Often, chaplains are brought in to help with planning or even officiating the funeral.
For many patients who are able, speaking with a chaplain about their wishes offers them a chance to request specific poems, scriptures, songs or prayers that they would like to be read or played at their funeral. It also offers the chaplain an opportunity to gather information about the patient to ensure it’s a personal event that honors them in an appropriate way. Speaking about and planning their funeral ahead of time gives the patient peace of mind in knowing the funeral is taken care of — which can help relieve a lot of stress later in the hospice journey.
For hospice patients, navigating their spirituality is a big part of end-of-life care. Hospice chaplains play an important role in helping each individual patient and family member find the comfort they need, no matter their religious belief or background.
On the morning that Wayne Briese had chosen for his medically assisted death, he was out shovelling snow in front of his house at 6am, to make sure the doctor would be able to get her car in.
It was January 6th, 2022, almost four years after he had been diagnosed with Alzheimer’s disease at the age of 73. As soon as he received that news, Wayne made it clear to his wife, Jule Briese, that when he no longer had the quality of life that was acceptable to him, he wanted to avail of Medical Assistance in Dying (Maid), which was first legislated for in their home country of Canada in 2016.
“I do not want to end my days as a lost soul in a nursing home,” he told her.
At the outset, there was some doubt in their minds about whether Maid was available to somebody with dementia. Once it was clarified it could be possible, Wayne described it as “the light at the end of the tunnel”.
“I was very supportive because I know Wayne would have honoured what I wanted,” explains Jule (78), in a Dublin city hotel on a sunny September morning. She is holidaying here when we meet, her first trip to Ireland. Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
The Oireachtas Committee on Assisted Dying is due to resume its public hearings today after the summer break. At the first of the committee’s five hearings so far, on June 13th last, its chairman, Independent TD Michael Healy-Rae, outlined: “The committee may recommend that changes are made to existing policy and legislation around assisted dying, but it could also recommend that no changes be made.”
The committee was set up after a Private Members’ Bill, Dying with Dignity Bill 2020, which seeks to allow for somebody with a terminal illness to request a medically assisted death, had passed the second stage in the Oireachtas.
In 2013, Marie Fleming, who was living with advanced multiple sclerosis, lost a landmark Supreme Court challenge for the right to an assisted death without putting anyone who helped her at risk of prosecution. She had claimed the ban on assisted suicide was discriminatory in that an able-bodied person may take their own life lawfully, but she could not be lawfully helped to do the same.
Wayne was always open and ready to talk. He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s
— Jule Briese
Jule and Wayne had been married for almost 52 years at the time of his death and had been “each other’s best friends” since meeting as teachers in Ontario. For the last four years of their marriage, they comforted each other in the carrying of their individual burdens: he sensing the disease was erasing the blackboard of his life, and she the witness to its unstoppable advance. The fact that Wayne never lost his insight into what was happening “was both a blessing and a curse”, she says. He could empathise that it was hard for her too.
Jule Briese: Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
Jule’s way of working through anticipatory grief of the loss of her husband was to write. A memoir booklet, entitled In the Hot Chocolate and Decadent Cake Society (2018), captured some of her early thoughts and those first telltale signs of confusion. In October 2017, as Wayne looked for his pyjamas in the wrong cupboard instead of going to the shelf where they were always stored, “fear scrapes its finger along hollows, unsettling my insides”, she wrote. She knew they were reaching the stage where “no longer content to be ignored, this elephant trumpets for more attention”.
When the anticipated diagnosis of Alzheimer’s was confirmed three months later, at the Brain Health Centre in Vancouver, it was “still surreal”, she tells me. They initially wondered, as it was a research centre, could they be involved with some research. But there wasn’t anything for Alzheimer’s and they felt “cast-off and adrift”.
How they navigated the next four years, from diagnosis to his date with death, is a story of personal choice, stresses Jule. But she believes there’s healing power in telling stories because it gives permission to other people to share theirs, with every listener, or reader, taking out of it what is for them and passing it on. She also wants to honour Wayne’s courage and “to give voice to what he was passionate about, and that was the right of the individual to an end-of-life choice”.
The couple, she says, did not choose to avail of Alzheimer’s medications for what is an incurable and progressive condition. “Diet, exercise and making your life meaningful… that is what was important to us.”
What was also at the back of their minds was that some of the drugs mask the progression.
“You get to a point where they don’t work any more – you were here, and there you are now,” she says, demonstrating a gulf that they had no wish to cover in a sudden leap. It is not that they were anti-medication, and Wayne did take a pill for anxiety from the second year onwards, but rather, it was a matter of weighing up the benefits and side effects.
Wayne lodged documents with a lawyer straight after his diagnosis, outlining his desire for Maid and his definition of quality of life. Jule knew it would be her job to look out for the red flags that would signal stages of decline. Meanwhile, they got on with life, in which the outdoors had always played a large part. “We hiked, we camped. We weren’t overly social people; we had a small circle of friends.”
With Wayne’s permission, Jule recorded the two of them talking about issues. She devised questionnaires relevant to how he was coping with daily life, and they could use his responses to give a fuller answer to the “How are you?” opening gambit at medical check-ups. Extracts from these recordings, along with selected email exchanges with his doctor and notes from Jule’s journaling, were published earlier this year in a book, Shared Conversations – Glimpses into Alzheimer’s.
The book Shared Conversations – Glimpses into Alzheimer’s was published earlier this year.
“Wayne was always open and ready to talk,” she says. “He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s.”
In the main, friends were really supportive, but “there are those who don’t know how to cope, and they leave”.
Once the couple had established that assisted dying was a possibility for somebody with dementia, they contacted Dr Tanja Daws, who Jule had heard spoken warmly of as the doctor at the centre of somebody else’s experience of Maid. At the first meeting with the couple, Dr Daws told them it was going to be a long journey, “we are going to be together for a while”.
“And we were,” says Jule. They met her every three months after that, over nearly four years. A second, independent doctor must be involved in the assessment for Maid, so Daws referred Wayne to a geriatric psychiatrist, Dr Pawel Juralowicz, for parallel appointments. Both of them would have the chance to get to know Wayne in the lead-up to him making a formal Maid application.
A big concern for Wayne was that a time might come when he would no longer be deemed capable of giving consent, and then his choice of a medically assisted death could no longer be enabled. But a Canadian legislative amendment, Bill C-7, in March 2021, removed that worry. It allowed, in certain circumstances, for assisted dying to go ahead for an eligible patient who had agreed in advance a waiver of final consent with their doctor.
“Sometimes it’s called Audrey’s Bill,” says Jule in reference to a high-profile campaigner, Audrey Parker, who had stage-four breast cancer and had been assessed and approved for assisted dying. She had hoped to see out one more Christmas, but, afraid that pain medication would remove her ability to give final consent, she went early, choosing November 1st, 2019, for her death.
‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne
— Jule Briese
By early 2021, an escalation of Wayne’s dementia was unsettling both him and Jule. By July, he was struggling to know how the people around him fitted into his life. In a conversation recorded on July 22nd, 2021, Jule said to him: “We’ve talked about red flags and you said something like: ‘When I get to the point of not knowing who my wife is and when I get to really being in a confused state, then it’s time to think about Maid.’ Would you say that you are actually beginning to experience those things that you did not want to have to happen to you?”
“I think that is a correct observation by you,” he replies. “Is it all right to say that?”
They agreed that episodes of confusion were becoming more prolonged and that they were nearing “10 minutes to midnight”. This is a term Dr Daws used for the time at which Wayne would need to apply for a Maid assessment, to verify that he met the criteria and was fit to sign a waiver for it to go ahead without his last-minute consent, if incapable at that point.
Everybody has their own definition of quality of life, says Jule. “You had to deteriorate to a certain point, where your quality of life as you defined it was in jeopardy, and it was at that point you could set your date for Maid.”
Choosing to be formally assessed is one thing, but how do you know when to set the date? It was a question Wayne asked both of his assessors in December 2021. Jule recalls how Dr Juralowicz suggested to him that the consciousness knows when the time is right, while Dr Daws replied: “Wayne, if life is a stage, how do you want to take your final bow?”
“Within a week, Wayne said, ‘I want to have Maid after Christmas’ – that was on December 18th. I said ‘before new year’s?’ and he said ‘No, no, after new year’s.”
He set the date for January 6th, 2022, at 10am.
“Two months before he set the date, he’s in the shower and he called me, ‘Come quick’. There was his smiling face, ‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne, it’s not about me, and I think that’s really important.”
With the date set, the challenge was how would they spend the finite days left? They had envisaged they would enjoy a quiet getaway together on the west coast before Wayne said his goodbyes to relatives and friends. But, as it turned out, he had already reached a stage where he didn’t want to leave their home at Qualicum Beach on Vancouver Island.
Jule Briese: ‘He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.’
So they stayed put, and Wayne made phone calls to people important in his life. The couple invited close friends over to dinner and a special friend played a clarinet concert for him.
On a lighter note, Jule recalls how a niece, Kashmir, who had spent time with them while attending university nearby, had bought a gingerbread train kit as a fun gift for Wayne that Christmas before she knew he had set a date for Maid. “She said to me, I don’t think somebody that is dying is going to want to do this. I said ‘I think you’re right and we will give it to grandchildren of a friend’.”
However, when there was a power cut one afternoon, they decided to take it out and assemble it between the three of them.
He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’
— Jule Briese
Kashmir was disgusted to discover the kit did not include icing. “She said, ‘Who on earth would do this for kids and not have icing?’ I said I have honey. It was a mess, but it was like we were all kids. It was such a priceless memory.”
Although describing themselves as “more spiritual than religious”, the couple invited a local Anglican priest to be with them on the day Wayne had chosen to die. He came at 9am and, in the course of conversation around their pellet stove, Wayne spoke of how he had been blessed in life and had no regrets.
“Then he turned around to me and said beautiful things and to Kashmir.” When Dr Daws and a nurse arrived, the couple moved into the room that overlooked the garden though double glass sliding doors and the priest gave each of them an individual blessing for their diverging paths.
In a last-minute flash of Wayne’s characteristic humour, he looked at the nurse and said: “Where have you been for the last 40 years? Finally, somebody that can put in an IV.” Then he told them: “I’m ready.”
“I held his hands and Kashmir held his feet,” says Jule. “It’s like he was on his journey and preparing to leave, we had said our goodbyes. I was there to witness his leaving.” Opera singers performing some of his favourite John Denver songs, from the album Great Voices, were playing in the background.
“He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.” When it was over, Jule asked to spend some time alone with him and played a song she had written for him called My Best Friend.
As medically assisted dying goes, she feels she and Wayne had the “gold star” experience. Training she had done in her 50s for conflict resolution, mediation and negotiation had equipped her to communicate with Wayne throughout the lead-up.
“If I had not taken those [courses], we would never had had those conversations. It taught me to be curious.” Out of their discussions, she has created a one-act play, Ten Minutes to Midnight. She believes it will be an educational tool, showing how to communicate with somebody with dementia, as well as giving insight to doctors.
Jule is grateful for what Wayne’s choice meant for her. “He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’. There’s the compassion. He gave me the gift of his life,” she says, as her composure throughout the interview falters for the first time. “Therefore I have to use that.”
Suicidal thoughts — also called suicidal ideation — include wishes, thoughts, and preoccupations with death and suicide, according to StatPearls.
Suicidal thoughts can fluctuate in intensity and duration. They tend to follow a “waxing and waning” pattern, where they’re more intense at certain times and level out — or possibly subside altogether — during others, the authors of the report noted. Sometimes they’re fleeting, passive wishes to simply cease to exist, and sometimes they’re persistent and overwhelming thoughts of harming oneself.
“When such thoughts first occur, they often feel intrusive and frightening,” says Amy Mezulis, PhD, a licensed clinical psychologist and co-founder and chief clinical officer at Joon Care, a mental health care platform for teens and young adults. “For some individuals who struggle with depression or suicidal thoughts for a long time, they can start to feel almost normal,” she says.
The types of suicidal thoughts one experiences can vary from person to person and are considered either passive or active in nature, per the aforementioned report.
Passive Suicidal Thoughts
Passive suicidal thoughts are when someone loses the motivation to live, but they do not have a plan in place to end their life, according to Salt Lake Behavioral Health in Salt Lake City, Utah. “These can be thoughts such as wondering what it would be like to be dead or to not wake up in the morning,” says Dr. Mezulis.
Even though someone with passive suicidal thoughts doesn’t have a plan in place to end their life, these thoughts could eventually progress into active suicidal thoughts and lead to a suicide attempt, per the aforementioned StatPearls report. Passive suicidal thoughts should be taken very seriously.
Active Suicidal Thoughts
Suicidal thoughts are considered active when someone loses the will to live and has a plan in place to end their life, per Salt Lake Behavioral Health.
“Active suicidal thoughts refer to thoughts that focus on methods and plans for dying by suicide,” says Mezulis. “These can be thoughts such as considering different suicide means or making a mental plan for dying by suicide.”
Causes and Risk Factors for Suicidal Thoughts
“Suicide is complex and there is never a single cause,” says Jill Harkavy-Friedman, PhD, the senior vice president of research for the American Foundation for Suicide Prevention. “There are many potential contributors that may combine to create or increase risk.”
Factors that could raise your risk for suicidal thoughts, per Mayo Clinic, include:
Feeling hopeless, worthless, lonely, or socially isolated
Experiencing a stressful life event, such as the loss of a loved one or financial problems
Having a mental health condition like depression
Having a substance use disorder
Having a chronic disease, chronic pain, or terminal illness
Having a history of physical or sexual abuse
Family history of suicide
Having a family history of mental health conditions
Being lesbian, gay, bisexual, or transgender without a supportive family or living in hostile surroundings
Having prior suicide attempts
Signs and Symptoms of Suicidal Thoughts
The warning signs that someone may be having suicidal thoughts, per Mayo Clinic, include:
Talking about suicide and openly wishing to die or be dead
Obtaining the means to end one’s life, such as stockpiling pills or purchasing a gun
Withdrawing socially and expressing a strong desire to be alone
Having mood swings, such as feeling emotionally high one day but down and discouraged the next day
Fixating on death, dying, or violence
Feeling hopeless or trapped in a situation
Increased drug or alcohol use
Changing their usual routine, including sleeping and eating habits
Experiencing severe anxiety or personality changes
Engaging in risky behavior, such as reckless driving or substance use
Giving away personal belongings, drafting a will, or getting their affairs in order when there’s seemingly no logical reason for doing so
Saying goodbye to friends and family as if they will never be seen again
How Suicidal Thoughts Affect Your Health and Well-Being
Suicidal thoughts can take a serious toll on your emotional and physical well-being, in addition to heightening your risk of dying by suicide or injuring yourself in a suicide attempt, according to the CDC.
The human brain can only process so much information at a time, says Mezulis. So when a person is experiencing constant suicidal thoughts, much of their cognitive and emotional energy is consumed by them, she says.
“That can be exhausting, both psychologically and physically,” Mazulis explains. “Persistent suicidal thoughts can impact mood and health, contributing to a cycle of negative mood and suicidal thoughts that can be difficult to interrupt.”
The most serious consequences of suicidal thoughts are attempted suicide or death by suicide. People who survive a suicide attempt can be left with serious physical damage to their bodies that can be debilitating or even permanent, according to Cross Creek Hospital in Austin, Texas. The effects can include:
Scars
Broken bones
Hemorrhage, or heavy bleeding
Organ failure
Brain damage
Paralysis
Coma
Prevention of Suicidal Thoughts
Suicidal thoughts are often part of a larger issue, such as an underlying mental health condition like depression, substance use disorders, or schizophrenia, according to research. “Treating these underlying mood conditions [or other mental health conditions] can help prevent and reduce suicidal thoughts,” says Mazulis.
But not all people who experience suicidal thoughts have a mental health condition — stressful life events such as relationship problems, the death of a loved one, or eviction can lead to suicidal thoughts, too, according to the National Alliance on Mental Illness. Similarly, addressing those contributing factors (through strategies like talking to a mental health professional about those stressors and finding ways to manage the resulting feelings of distress, for instance) can help lessen suicidal thoughts, too.
Other factors that can protect against suicide and suicidal thoughts, per the CDC, include:
Having access to high-quality, consistent healthcare for mental and physical health conditions
Developing effective coping and problem-solving skills
Focusing on your reasons for living, such as family, friends, or pets
Having or developing meaningful connections with others
Having a strong sense of cultural identity
Getting support from friends and family
How to Cope With Suicidal Thoughts
Suicidal thoughts should always be taken very seriously. Don’t wait to get help for yourself or a loved one who’s considering suicide.
“If you feel like life is not worth living, notice changes in your thoughts and behaviors that make it hard to keep going, or you feel depressed or hopeless, it is important to trust your gut and take action,” says Dr. Harkavy-Friedman.
If you feel like you or a loved one are in imminent danger of suicide, call 911 for emergency help. For immediate crisis assistance from a trained counselor, you can reach the free, 24/7 988 Suicide and Crisis Lifeline by calling or texting 988, or the free, 24/7 Crisis Text Line by texting HOME to 741741.
If you feel you’re not in immediate danger, you should schedule an appointment to see your doctor or therapist to talk about what you’re going through, according to Mayo Clinic. They can help you determine the severity of your suicidal thoughts and come up with a treatment plan to manage them.
Treatment options for people experiencing suicidal thoughts, per Mayo Clinic, may include:
Psychotherapy Also called “talk therapy,” psychotherapy involves working with a licensed therapist to explore the root causes of your suicidal thoughts and learn skills to help you manage your emotions.
Medications These could include antidepressants, antipsychotics, or anti-anxiety medication if you have a mental health condition. Managing the symptoms of a condition can in turn lessen suicidal thoughts.
Addiction Treatment If you have a substance use disorder, getting treatment for it can reduce suicidal thoughts. This could include detox, addiction treatment programs, or self-help group meetings.
Along with professional treatment, practicing self-care can help you feel better and can reduce thoughts of suicide over time, says Harkavy-Friedman. Some self-care strategies that can help are getting regular sleep, exercising, eating a nutritious diet, spending time with friends and family, and making time for things that bring you joy, she says.
You could also reach out to family members, friends, or members of a faith community, for instance, when you feel like you need support. Having a strong support system can help lower your risk for suicide, according to Mayo Clinic.
In addition, it could help to reach out to one of the suicide hotlines described above, even if you don’t feel like you’re in immediate danger. A trained crisis counselor can offer free and confidential emotional support and connect you to resources that could help.
The AFSP is committed to raising awareness about mental health and suicide, and funding research related to suicide and suicide prevention. They offer specific resources for anyone who is experiencing thoughts of suicide, has survived suicide attempts, has lost a loved one to suicide, or is worried about someone else with suicidal thoughts.
The 988 Suicide and Crisis Lifeline provides 24/7, free, and confidential support for people in distress, suicide prevention and mental health crisis resources, and best practices for health professionals in the United States. Dial 988 to speak with a trained crisis counselor who can help you if you or a loved one is experiencing thoughts of suicide. They also have a chat tool for those who are deaf or hard of hearing or who may otherwise prefer a chat option.
The NIMH is the lead government agency for research on mental health conditions. It provides a “Suicide Prevention” resource for people experiencing thoughts of suicide or for their loved ones.
Start with music that matches your frame of mind and slowly shift to more soothing themes. A suggested playlist can serve as a guide.
By Raymond Leone
Music can have a profound effect on us. It can improve our physical and mental health by helping to reduce blood pressure, alleviatestressand lead to a release of dopamine, a neurotransmitter that affects our mood and sense of happiness, research shows.
As a music therapist working in a hospital, I use music to help reduce anxiety in patients. A review of 19 randomized controlled trials showed “an overall decrease in self-reported anxiety” among healthy individuals after listening to music, and a study I participated in found that a music therapy session resulted in positive outcomes for some patients.
I start with music that matches the patient’s frame of mind and slowly shift to more soothing themes. I find that their mood and affect will often follow. It’s called entrainment. We “entrain” to the music and follow along, both mentally and physically.
Listening or singing along to meaningful songs can also help people feel better.
I worked with a woman in her 40s who had been diagnosed with cancer. She was distressed because of the diagnosis, but there seemed to be another reason for her sadness that she could not put into words.
>We spoke about music and her favorite meaningful songs. She mentioned that she loved listening to Fleetwood Mac, especially the song “Landslide.” I played and sang it for her. She cried and when the song concluded, she said, “I know why I’m so distressed. I’m worried about my children.”
The song, which features the words, “even children get older,” helped her to identify her concerns. We were then able to converse about her children and start to work on a plan for how she would tell them.
Music can speak for us
Sometimes, when we are gripped by panic and anxiety, we may not have the words to describe how we are feeling. Then, a song comes on the radio or our playlist, and it hits us: “That is exactly how I’m feeling!”
Music — whether the dark, minor essence of Beethoven or the down-tempo sparseness of Lucinda Williams — can speak for us, especially when we are feeling anxious or depressed. Susan Cain explores feelings of longing and melancholy in her book, “Bittersweet: How Sorrow and Longing Make Us Whole.” She theorizes that acknowledging and accepting these feelings make us whole and are comforting.
She references music as a way to help us navigate and own these feelings and says there’s power and a unique beauty in sad or melancholic music.“A moon-lit sonata can be therapeutic for people experiencing loss or depression; it can help us to accept negative emotions rather than ignoring or repressing them; it can show us that we’re not alone in our sorrows,” she writes.
Music is subjective
There are many articles with headlines such as “10 best songs to help you relax, according to science” or “30 songs to soothe you when you are anxious.”
What if you don’t like most or any of those songs?
One of the great things about music is that it is subjective and how we use it is personal, too. We can explore ways to use music, all kinds of music, to help us in our lives when we need it. There are times, particularly after an emotional day at work, when heavy rock music relaxes me. The sounds and aural atmosphere match my inner feelings and angst at that moment. It’s a release.
How I use music to help my patients
I generally use live music, improvised mainly on the guitar, to help people with pain and anxiety in a clinical setting. Live music helps me meet the patient where they are. I can then gradually change and manipulate the music to help bring them along to a more relaxed place. Sometimes, the patients fall asleep at the end of the music.
I have developed my music therapy technique over years of practice. These are the steps:
The initiated soundscape is empathic; it reflects what the patient may be going through or feeling inside. The music is “entraining” to their inner psyche of the moment.
The music may initially include some tension and dissonance.
Then the music starts guiding them toward a new, more relaxed place. It has some release from the tension and more soothing and harmonic themes.
It moves toward more resolve and grounding and focuses on aesthetics or beauty.
Many times, the music concludes, having moved toward one chord — a simple two-note mantra.
How you can use music when you are anxious
When you are feeling anxious, instead of finding some “relaxing” music, put together a personal playlist and let the music or the song sequence guide you.
Start with a song or piece of music that matches your current mood. The initial song or songs can have a little more intensity, some tension and dissonance or melancholy. Then each ensuing song can gradually, one step at a time, help bring you along toward a more relaxed place.
Use music that you like. Maybe it’s Norah Jones or 80s pop or classic jazz or Mozart.
Here is a sample playlist with some instrumental guitar music, starting with a bit more intensity and then moving toward comfort and relaxation:
“Prelude” — Alex de Grassi
“Fusion of the Five Elements” — Michael Hedges
“Megalopolis” — Rodrigo y Gabriela
“The 2nd Law” — Michael Hedges
“Sleeping Lady” — Alex de Grassi
“The Sprinter” — Isato Nakagawa
“Prelude in D Minor” — Acoustic Alchemy
“Saint Agnes and the Burning Train” — Sting
“A Child’s Song” — Will Ackerman
“In This Moment” — Ken Verheecke
“The Rain Is Pouring” — Alex de Grassi
“For the Asking” — Will Ackerman
“The Water Garden” — Alex de Grassi
“The Bricklayer’s Beautiful Daughter” — Will Ackerman
“Golden Slumbers” — Erik Söderlind
Music can meet us where we are — perhaps anxious, depressed or low — and help take us to where we want to be — calm and relaxed. Pick what moves you and make music work for you.
— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
by Keri Wiginton
My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.
Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.
Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
How did I get here?
It was my therapist’s idea.
A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.
I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.
I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.
My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.
So, my doctor set me up with a goal-oriented behavioral counselor.
I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.
We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.
I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.
That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.
After that, I relaxed into my new role visiting people who are dying.
I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.
Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.
I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.
Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.
“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”
Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.
My compassion leaves a lasting impression even if my identity doesn’t.
Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.
I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.
I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.
A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.
In other words, “you’re wired to feel better through doing this,” said Post.
At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.
I feel more confident in other areas of my life because I feel successful at volunteering.
“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.
We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.
My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.
Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.
There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.
Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.
“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”
I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.
“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”
I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.
A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.
“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.
According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.
“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”
It’s natural to worry about death—whether it’s your own or a loved one’s. But for those with thanatophobia, feelings of worry and anxiety over dying are so intense, it impacts their ability to function day-to-day.
Though death is unavoidable, it’s possible to overcome thanatophobia. This requires knowing the symptoms, understanding the reasons why it can develop, being properly diagnosed and working with a mental health professional. When left untreated, fear of death can prevent one from living the full life they deserve to live.
What Is Thanatophobia?
Thanatophobia is the fear of death or the dying process. “We all fear things, and many people are afraid of death,” says Jenna DiLossi, Psy.D., a specialist in phobias and the co-founder of the Center For Hope and Health located in Pennsylvania. “But a phobia has a certain level of intensity and pervasiveness of fear.”
Rachel Menzies, Ph.D., is a clinical psychologist, the director of the Menzies Anxiety Centre in Australia and a leading expert on thanatophobia. She has written several books on the topic, including Free Yourself From Death Anxiety. Thanatophobia can involve fear of death itself or the dying process, she explains. “It could be related to the fear of not existing one day or it could be the fear of death being really painful,” she says. Thanatophobia can also mean having a phobia of others’ dying, she adds.
The difference between having a “normal” fear of death and a true phobia is the level it impacts one’s daily life, says Dr. DiLossi. For example, someone with thanatophobia may avoid certain activities, such as driving, because they worry it will kill them.
Thanatophobia is not in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5); instead it’s considered a “specific phobia.” The criteria for being diagnosed with a specific phobia is as follows:
Fear about a specific object or situation (in this case, death or dying)
The situation almost always causes immediate fear or anxiety
The fear is disproportionate to the actual danger
The situation is actively avoided or endured with intense anxiety
The fear impacts one’s daily life, such as their social life or job
The fear has been present for at least six months
It cannot be explained by symptoms of another mental health disorder
Dr. Menzies emphasizes that feeling queasy or anxious about death is natural. It’s when the anxiety surrounding death starts impacting one’s daily life that it’s considered a phobia. For example, someone with thanatophobia may be unable to focus at work or the phobia gets in the way of them pursuing meaningful activities, such as traveling, she says.
Thanatophobia Causes and Risk Factors
Both experts say that anyone can be thanatophobic; both old and young people, people who have strong religious beliefs and people who don’t, people who are physically healthy and people who are sick. However, there are some risk factors that can make someone more likely to experience this specific fear. Both experts say that individuals with obsessive compulsive disorder (OCD) are more likely to be thanatophobic. Dr. Menzies explains that for some people with OCD, the reason why they engage in compulsive habits (such as hand washing) is because they believe it will prevent something bad from happening, such as an untimely death.
Women are more likely than men to have thanatophobia since women tend to have more general anxiety than men, says. Dr. Menzies. Research also shows that people in middle age are more likely to have a fear of death than elderly adults. Dr. Menzies hypothesizes that older people may be less anxious about death because they come to accept it more, in part by seeing others die. However, she notes that witnessing someone experiencing a painful or traumatic death can also make thanatophobia more likely.
In terms of the link between religious beliefs and thanatophobia, anecdotally, Dr. Menzies has noticed in her clinical practice that people who are unsure of their beliefs tend to be more fearful of death than those who believe strongly in what will happen after death.
“Both very committed religious believers and committed atheists are less likely [to be thanatophobic] than people in the middle who are uncertain about the afterlife,” she says. Scientific studies show there is not a connection between one’s specific religious beliefs (such as Christian or Muslim) and the likelihood of having a fear of death.
Thanatophobia Diagnosis
As previously mentioned, thanatophobia is not its own specific condition included in the DSM-5. The closest diagnosable condition is “specific phobia,” says Dr. DiLossi. When diagnosing someone with thanatophobia, clinicians refer to the list of criteria for specific phobia, she explains.
Both experts emphasize that the main sign that someone is thanatophobic is that their fear of death (either their own or someone else’s) is impacting their daily life. This can include getting in the way of work (such as being unable to focus), being preoccupied during social events (such as being unable to enjoy spending time with friends or family due to being preoccupied by thoughts of death) or avoiding meaningful activities because of the fear that it will lead to death (even though the risk for this happening is low).
Thanatophobia Treatment
With professional help, thanatophobia is treatable. According to both experts, as with other phobias, the most common treatment for thanatophobia is cognitive behavioral therapy (CBT), a psychological treatment that examines what one thinks and what one does. First, a therapist will explore where the client’s fear of death stems from. They will also ask about the ways this fear is limiting their life. Then, they will work through actionable steps so that it no longer holds them back.
For some individuals, longer term and more intensive psychodynamic and existential therapies are needed if the symptoms of their thanatophobia return after CBT.
With other phobias (such as spiders, driving or heights), both experts explain that CBT uses exposure therapy to incrementally help someone become more comfortable with the object or circumstance surrounding their fear. For example, someone with a fear of driving may look at a car, then work up to sitting in a car and then eventually driving it. Working through a fear of death has similarities and differences; for example, Dr. Menzies says that she may have a thanatophobic client start by reading the obituaries. Then, she may ask them to plan their funeral or will. “Really anything that moves toward acceptance of death and away from denial or avoidance [will help],” she says.
Unlike with other phobias, Dr. Menzies says that being around death itself is not part of overcoming thanatophobia. Treatment also does not involve doing risky activities that would jeopardize one’s safety, says Dr. DiLossi.
Living With Thanatophobia
Death is inevitable. This raises an interesting question: How does the death of a loved one impact someone with thanatophobia? “For some people, this experience will actually help them cultivate an acceptance of death, particularly people who are desperately trying to prevent their own death,” says Dr. Menzies. But for others, the death of a loved one can exacerbate their fear, making it worse. “It greatly depends on the circumstances surrounding the death,” she says. “Was the person in pain? Was it peaceful?”
If the death of a loved one has made someone’s fear of death more pronounced, it’s especially important to reach out to a mental health provider who can provide actionable tips based in CBT that can help them cope, says Dr. Menzies.
Both experts say that overcoming thanatophobia does not mean that someone will not be fearful of death at all; what it means is that their fear will not impact their daily life.
When to See a Doctor
If a fear of death is impacting your daily life, it’s important to see a mental health provider who specializes in phobias or CBT, experts note. One way to find a CBT therapist near you is by using the directory created by the Association for Behavioral and Cognitive Therapies. You can also see your primary health care provider, who can connect you to a mental health provider.
“There’s a misconception that since death is unavoidable, people with this phobia need to just ‘get over it.’ That is untrue. There is specific treatment for thanatophobia,” Dr. Menzies says, referring to CBT. “There is very good evidence that people can overcome thanatophobia. This is not something someone has to live with.”
I hoped a death meditation workshop would ease my fear of dying. And then something else happened.
By Deborah Netburn
On a recent Saturday night, the scene was serene inside Tac-tile Mountain, a small, carefully curated shop in Pasadena. The meditation cushions were laid out on the concrete floor. A sea of white candles was flickering in the window. And then the restaurant next door started blasting “Umbrella” by Rihanna.
The six of us who had gathered inside laughed nervously. We were already excited and a little hesitant. After all, we were there to contemplate our own deaths.
Tac-tile Mountain was hosting “Death Reflections,” a two-hour, $55 workshop led by Marifel Catalig, a trained death doula and breathwork instructor. It had been advertised on Instagram as “a breath guided meditation intended to contemplate death in many forms.” The description ended there, so no one knew exactly what to expect.
Going into the workshop, I hoped that spending an hour meditating on my inevitable demise would ease my fear of dying. What I didn’t anticipate is that I would walk out feeling profoundly grateful for all the ordinary, messy, glittering life I’ve been blessed to live so far.
“What I have been seeing for 15 years now is that knowing one has to die allows one to value life, and feel more grateful for what life allows us to do and enjoy,” she said.
Catalig, 40, greeted us at the door wearing a white blouse and wide-legged jeans, and then asked us to find our seats. After lighting the candles that were placed at the head of each of our cushions, we began with a gentle movement to release the tension of the day, and then focused on our senses — paying close attention to what we could see, hear, taste, feel and smell.
Death meditations are wildly variable. In the Buddhist tradition the practice of maraṇasati, or mindfulness of death, is designed to remind practitioners that death might come as soon as the next morning, the next meal or even the next breath, and encourage them to act accordingly. Another Buddhist practice focuses on a detailed visualization of the body’s eventual decay to help relinquish attachment to the material world.
Catalig once attended a death meditation where participants were wrapped in a white sheet to mimic the shroud they might wear after they die. Another time she led a living funeral workshop where people were asked to write a eulogy for themselves that she read out loud to the group.
The meditation I attended was simpler. The focus was primarily on the type of life review many people undertake before they die.
Accompanied by a playlist of instrumental music that was more evocative than annoying, Catalig asked us to imagine our earliest memories and consider where we were, who was there, what we felt like, what it smelled like and what sounds we heard. We did the same for our early childhood, pre-adolescence, adolescence, early adulthood and on.
As she spoke, memories of the many lives I’ve lived flashed through my mind. Most of them were mundane, but they filled me with a sense of tenderness. There I was playing with a Fisher-Price barn on a green carpet, walking to school in new saddle shoes, riding bikes on the sidewalk with my sister. I saw sleepovers and middle school dances, late summer nights wandering around my hometown, blissfully bored and aimless.
Nobody has lived your life but you. All of your experiences, everything that got you here, that belongs to you.
— Marifel Catalig, breathwork instructor
I saw scenes from my adult life before kids, my life as a new parent, my life with small children and, finally, my life now — my husband, my teenage sons, my colleagues, my friends. All the different and distinct lives I’ve lived.
“Nobody has lived your life but you,” Catalig said. “All of your experiences, everything that got you here, that belongs to you.”
Then the music shifted and she asked us to imagine that we were nearing death. Our eyesight was fading, our hearing becoming more muffled. Food didn’t taste as good as it once did and we were eating less. In my mind I felt myself receding from the immediacy of life — a fog of gray between me and the world. As my experience of the world became more muted, I felt less afraid of leaving it.
Then Catalig had us imagine our last days. Who would visit us? What would they say? And then we pictured our last breath. “What do you want to breathe in?” she asked. “And what do you want to breathe out?”
We imagined hovering above our lifeless bodies, what they would look like, and who would tend to them. For a brief moment, we imagined what might be next.
In a society that rarely encourages reflections on death and dying, many of us respond to our innate fear of death with denial, Testoni said. Carving out time to visualize and imagine our own passing can help us face that fear in a productive way.
“Reflection makes us realize that we are afraid of something we do not know,” she said. “Knowing that we don’t know but we can know a lot is definitely reassuring.”
When the meditation was over, Catalig invited us to share about the experience.
One participant said the meditation helped her reframe the times in her life when she thought she was a bad person. Instead, she saw herself with more compassion. Another participant said she felt that her higher self had been with her all along, and was still with her. This brought her great comfort.
As for me, I walked out of the store in a state of elation. I was less afraid of dying, but mostly I felt so thrilled to be alive.
If you’re curious to try one of Catalig’s death meditations, you can find future offerings on her Instagram page, or contact her through her website breathtodeath.com.
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