Recently, I’ve been reminded again how much words matter. And especially so when it comes to talking or writing about the death of a dear one.
For example, a friend told me she really is not a fan of the word bereaved. She prefers the word alone. I get it, and this is probably a better word for several reasons.
The death of a spouse or partner certainly results in a lot of aloneness. But it’s not limited to partners. The death of a parent, best friend, child or other dear one can leave one feeling very alone. It’s bigger and more personal word than bereaved.
In another example, a friend said she doesn’t care for the word grief anymore. The way I understood it, she meant that, as she had been learning how to cope with the death of her beloved spouse, the word grief felt as if it’s drawing her backward. This at a time she’s trying to adjust going forward without him. This made me stop and think.
I think these are two reminders of how complicated it is to talk about death, and how personal it is. So I started reflecting on myself. And I realized I have quite a list of do’s and don’ts as well! Mine center on common euphemisms. For instance, I personally avoid words such as lost, passed, passed away, late, taken, departed and other euphemisms. I would rather hear or read the actual word — died. Especially when it comes to my own loved ones.
In one episode of “Downton Abbey,” actress Maggie Smith, who played the role of dowager Lady Grantham, had a visitor. When that person referred to her husband as “was taken,” she said something like this: Lord Grantham was not taken, he died.
Now I realize not everyone feels as strongly as I do about this topic. And I realize these other words are in very common usage, and friends and family do not mean to upset or irritate us by using them. Actually, even many clergy and funeral directors use those very euphemisms. So be it. And they are commonly written in obituaries and used in eulogies.
We already are well aware that most people struggle with what to write in a card or note to a friend. But how to refer directly to the person who died is a somewhat different challenge.
So what is the point? Well, I think it’s basically we need to figure out what your friend or relative prefers. It’s complicated of course. You may know the person well enough to know what to say. But a surefire way to know is — just listen to them. You will hear the right word.
There was nothing unusual, in the early 1970s, about a student hearing one of his professors preach during chapel.
But one sermon — “How Would You Like to Die?” — impressed the seminarian who would later become United Methodist Bishop Timothy Whitaker of Florida. Theologian Claude H. Thompson had terminal cancer and, a few months later, his funeral was held in the same sanctuary at the Candler School of Theology in Atlanta.
“What hit me was that he calmly preached on that subject — even while facing his own death,” Whitaker said. “It hit me that that, if death is one of the great mysteries of life, then that needs to be something that the church openly discusses. …
“Yes, we live in a culture that is reluctant to talk about death. But I decided that it’s important for us to hear from our elders who is facing this issue, head on.”
Thus, soon after doctors informed him that his own cancer is terminal, Whitaker wrote a lengthy online meditation, “Learning to Die.” The 74-year-old bishop is retired and receiving hospice care, while living in Keller, a small town near the Virginia coast.
“Being a pastor, I considered it a privilege and also an education to linger beside many deathbeds. I have tried to never forget that, unless I die abruptly in an accident or with a heart attack or stroke, sooner or later the subject of death will feel very personal to me,” he wrote. Now, “in the time that remains for me I have one more thing to learn in life, which is to die. … I had always hoped that I would be aware of the imminence of my death so that I could face it consciously, and I am grateful that I have the knowledge that I am going to die soon.”
Certainly, Whitaker noted, the Orthodox theologian Father Thomas Hopko was correct when he quipped, while facing a terminal disease: “This dying is interesting.”
Dying is also complicated — raising myriad theological questions about eternity, salvation and the mysteries of the life to come, he noted. The Bible, from cover to cover, is packed with relevant stories, passages and images. The same is true of the writings of early church leaders who preached eternal hope, even when suffering persecution and martyrdom. Over and over, the saints proclaimed their belief in the resurrection of Jesus.
Whitaker noted that Methodists can ponder this quote from their pioneer John Wesley: “But what is the essential part of heaven? Undoubtedly it is to see God, to know God, to love God. We shall then know both His nature, and His works of creation and providence, and of redemption. Even in paradise, in the intermediate state between death and resurrection, we shall learn more concerning these in an hour, than we could in an age, during our stay in the body.”
But what about the big questions that modern believers might struggle to ask? What about their fears of living with a terminal disease and the complicated questions surrounding death itself?
Early Methodists believed that preparing for death was simply part of life, and outsiders noted that “Methodists die well,” Whitaker said. The problem in churches today is that dying is often viewed as “a counseling issue,” or merely a “therapeutic challenge” for busy clergy.
For centuries, Christians developed rites linked to what they called the “good death,” or even the “happy death,” he noted. While millions now shudder at the thought of dying alone in a hospital, clergy should teach — especially in the age of hospice — how believers can plan to die surrounded by family and their fellow believers.
Yet many clergy are reluctant to discuss these subjects from the pulpit or in educational events addressing modern realities, as well as centuries of rituals and prayers.
“I can understand this reluctance — because they’re going to have many parishioners who will be alarmed or upset by any open discussions of these topics that our culture wants to ignore,” Whitaker said.
“But the church is supposed to help us prepare for death. And this isn’t just about someone receiving a terrible diagnosis. Death is something that can strike at any moment. … The church can’t be silent, in the face of death.”
— Dying patient denied assisted dying in Catholic-run hospital
Jane Morris says her friend, who had motor neurone disease, ‘had a terrible experience and she had to seek help outside of the hospital system’ in order to die via voluntary assisted dying.
Sally wanted to die on her own terms. But despite voluntary assisted dying being legal in Victoria, her advocates say a Catholic palliative care facility obstructed access
When 60-year-old Sally* told her neurologist that she wanted to choose when to die, she was dismissed. Diagnosed with motor neurone disease, Sally knew her condition was incurable and that her rapid decline could include respiratory failure, difficulty swallowing and cognitive decline.
She wanted to die on her own terms, before her symptoms became unbearable. But Sally was receiving treatment at a Catholic palliative care hospital.
Sally lived in Victoria, where legislation allows those with neurodegenerative conditions such as motor neurone disease access to voluntary assisted dying. But her advocates say none of the doctors who diagnosed and treated her would provide the necessary paperwork for her to access euthanasia, nor would they refer her to someone who would.
Sally’s calls and emails to the hospital, an institution that objected to euthanasia, elicited promises of a response at a later date that never came.
“She had a terrible experience and she had to seek help outside of the hospital system,” says Jane Morris, the vice-president of Dying with Dignity Victoria. “She was one of the most lovely people I’ve ever met and it was cruel she was ignored or met with empty platitudes.”
By the time Morris met Sally, she couldn’t write and was communicating with a sight board. “She kept asking me to write down her story and tell it one day for her,” Morris says. “She told me that she wants voluntary assisted dying to be discussed openly, to be destigmatised and not subject to the religious doctrine of faith-based health facilities.”
Doctors and legal experts who spoke to Guardian Australia have called for voluntary assisted dying laws, which differ between the states and territories, to be nationalised and made more humane so that institutional objection does not lead to delays in care, or to patients dying in places they do not feel comfortable.
Depending on where someone lives, the catchment area they fall into may mean that the only local palliative care service is run by a Catholic organisation, which all have different policies about how they treat euthanasia. Under Catholic Health Australia’s code of ethics, any action or omission that “causes death with the purpose of eliminating all suffering” is not permissible.
Sally’s condition declines
The months of delays by the hospital would prove devastating for Sally. Her pain increased as her condition progressed, making it difficult to eat, speak and swallow. It meant taking the euthanasia medication orally was no longer an option, even if she was approved.
Desperate, Sally went outside the hospital system to a GP and asked for help. She was referred to the Victorian Voluntary Assisted Dying Statewide Care Navigator service, who helped her find a specialist and get the paperwork she needed, and she was put in contact with a voluntary assisted dying doctor trained to deliver euthanasia intravenously.
The doctor was not comfortable administering the medication outside a hospital and by the time she was approved, Sally was no longer well enough to travel to a health facility.
Plus, she wanted to die in her home.
When specialist doctor and voluntary assisted dying provider Eleanor* heard about Sally’s plight, she offered to help without hesitation. Eleanor assisted in getting approvals, travelled to Sally’s home and administered euthanasia drugs to her intravenously.
“I was sad and angry that she was delayed from accessing a service she had a right to,” Eleanor tells Guardian Australia.
“No one would write the letter that gave her access to voluntary assisted dying. She deteriorated very quickly and she lost the window in which she was well enough to comfortably go through the process in terms of going to doctor’s visits to get the approvals. So she needed to find doctors willing to come to her home. Unfortunately, cases like this are not rare.”
Sally’s situation was further complicated by federal legislation that prevents anyone seeking information or advice about voluntary assisted dying from a health professional over an electronic carriage service, ruling out telehealth consults for assistance. It is one of the reasons experts say uniform national legislation is needed.
Eleanor believes public funding for hospitals and aged care homes should come with a responsibility to provide a full suite of health services, including voluntary assisted dying.
“The alternative is sometimes to watch someone slowly suffocate to death, or die of a bowel obstruction, or starve to death because they can’t access a more humane way of dying,” she says. “We need national legislation to make the process more humane by taking the best of the legislation in each state and adopting it everywhere.”
It can also be difficult to find a doctor to administer or approve euthanasia drugs, with a shortage of trained voluntary assisted dying doctors, which Eleanor says is partly due to stigma and confusing legislation.
“Most doctors agree with voluntary assisted dying, but feel it is too hard to become a practitioner themselves.”
‘A huge power imbalance’
Victoria was the first state to pass voluntary assisted dying laws in 2017 and since then the other states have followed. In December 2022, commonwealth laws that stopped Australian territories from making new laws on voluntary assisted dying were repealed.
Three states – Queensland, South Australia and New South Wales – include institutional objection provisions in their legislation. Ben White, a professor of end-of-life law at Queensland University of Technology, says it means in those states, people are able to access voluntary assisted dying if they are a resident of an aged care or palliative care facility, even if the facility objects, because it is considered the patient’s home.
While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by their own policies, which White says aren’t always transparent. The Victorian health department has guidelines for how institutions can manage objections, but this is not binding. Health professionals are also barred in Victoria from raising voluntary assisted dying with their patients – the patient must bring it up first.
“I think we should be able to explain to people all the options they have,” says a health professional who has worked in end-of-life care for decades and did not want to be named. “I just believe in people being able to make informed choices – we’re talking about competent … people who already have a terminal illness.”
White agrees: “I think the key issue here is there’s a huge power imbalance.
“You’ve got people who by definition are terminally ill, expected to die shortly, trying to navigate and access voluntary assisted dying in a situation where the institution holds all the cards.”
In a study published in March, White and his colleagues interviewed 32 family caregivers and one patient about their experience of seeking voluntary assisted dying, including experiences with institutional objection. The objections described generally occurred in Catholic facilities or palliative care settings, which meant some or all of the euthanasia process could not happen on site.
Most commonly, patients were not allowed to meet with a doctor to be assessed; were prevented from accepting delivery of the euthanasia medication from a pharmacy; or were barred from taking the medication or having it administered to them.
White says it can leave families scrambling to transfer their loved ones elsewhere to die, including patients with conditions that made transportation painful.
One of the study participants said: “It will always be a great sadness for me that the last few precious hours on Mum’s last day were mostly filled with stress and distress, having to scurry around moving her out of her so-called ‘home’.”
There is a strong argument to limit the power of institutions to object to voluntary assisted dying when it harms patients, White says.
What Catholic hospitals could do
Oncologist Dr Cam McLaren says a component of cancer medicine is “fighting a losing battle and sometimes all you can do is choose the terms in which you die”.
It is why he became a voluntary assisted dying provider soon after Victorian legislation was introduced. “I was, and still am, in high demand and I have been involved in the assessment of about 300 voluntary assisted dying cases,” he says.
McLaren works for a Catholic hospital and says the values of religious organisations have “allowed them to do some incredible work in palliative care out of a desire to help people”.
He has helped facilitate the transport of patients off site to administer their euthanasia medication. He says different institutions have different levels of comfort with assisted dying and support certain “tiers” of access only; some allow doctors to consult with patients about the topic, but aren’t comfortable with the death occurring on site, for example.
“I completely support the ability of religious hospitals to refuse to be involved in practitioner administration of the drugs on site – that’s completely against their codes and morals,” he says.
“But a lot of the other steps in the process don’t involve any action. It’s just a conversation with a patient or information. And a discussion should not have the capacity to violate religious boundaries.
“I think a good model is for the hospital to allow the assessment and the delivery of the medication to the patient and then give patients time to plan to go home to have the medication administered there.”
But McLaren says this isn’t enough to protect patients in an aged care facility, where the facility is already home.
“And we have seen barriers in aged care homes overtly or covertly with non-assistance and noncompliance, so we have patients asking for months or weeks to access voluntary assisted dying and by the time they’re referred to me, it’s too late because the process takes time, which they don’t have.”
In NSW, voluntary assisted dying legislation will come into effect on 28 November, but there are still unanswered questions about barriers to access for patients being treated in religious public organisations.
People wishing to end their life in the state must be assessed by two doctors as likely having less than six months to live. A document seen by Guardian Australia detailing the response of Catholic health services Calvary Health Care, St John of God and St Vincent’s Health Australia to voluntary assisted dying suggests that these organisations will not allow assessments to be undertaken on site, with patients having to be transported elsewhere for the assessment or referred on to another hospital for care.
If a person has been approved for euthanasia to be administered by a medical practitioner, the document also outlines that the patient will need to go to another health provider or be discharged home. Doctors are concerned that these transfers may unnecessarily increase pain and suffering for patients at the end of their lives.
The document says “we do not abandon our patients” – if a person is considering or actively pursuing euthanasia, “our hospitals do not change our commitments to their provision of care”.
A spokesperson for Catholic Health Australia said on behalf of all three hospitals: “Our hospitals don’t provide [voluntary assisted dying (VAD)].”
“However, we recognise that some patients may wish to explore the option of VAD while under our members’ care. In that event, our services will never block or impede a person’s access to VAD if that’s their choice. Our services will always respect patient choice.
“When it comes to end-of-life, our members choose to specialise in palliative care. Other hospital providers choose to maintain an expertise in VAD. Transferring patients to a specialist provider when a service is not available is standard practice in the public health system.”
Dr Eliana Close, a senior research fellow at the Australian Centre for Health Law Research, has analysed institutional objection to euthanasia and says it is difficult to get data on how prevalent it is.
“We need to now see research and monitoring around how legislation in different states is unfolding and working in practice and whether rights are being respected,” Close says.
“We have certainly found we need stronger national laws to address that power imbalance between institutions and individual rights.”
Close says she finds it “completely abhorrent that publicly funded institutions should be allowed to deny access to legally available healthcare”.
“Not only is that causing harm to the patients in terms of pain and suffering, it’s causing harm to their families who have to witness it – and that has lasting impacts on their bereavement.”
Aging, incarcerated populations often have poor end-of-life care experiences, with a lack of trained hospice workers at the crux of the issue.
The end -of-life experience looks very different for seniors in prison, with many lacking access to support around the most basic human needs, according to David Garlock, a national public speaker. He is a formerly incarcerated criminal justice reform advocate and reentry expert.
“It’s terrible how many men and women are experiencing their last days or hours of life in prison,” Garlock told Hospice News. “Imagine you’re dying, laying in a bed you can’t get up from without any human contact for several hours in a day. I don’t think there are enough hospice programs in prisons around the country. A lot of times these programs are run by the incarcerated men and women, with nurses and doctors having a very small part in taking care of them.”
Garlock previously provided prison-based hospice care to fellow incarcerated individuals at the Kilby Correctional Facility, part of the Alabama Department of Corrections system. He currently speaks on health equity among prison populations.
Quality issues are tied to a limited supply of clinicians who are trained to provide hospice care in prison settings, Garlock indicated.
Not only do clinicians have limited windows of time at the bedside with incarcerated patients, but they also may not be able to provide the full scope of interdisciplinary services involved – including basic comfort and pain management, he stated.
Incarcerated hospice caregivers must abide by certain rules and processes when it comes to providing others with assistance, depending on the prison, Garlock explained. This means they can be limited in providing end-of-life care support with things such as changing sheets or diapers, bathing or moving the dying person, he stated.
“These are things that you technically had to have a nurse present to do in many cases,” Garlock said. “But it really depends on nurses as far as how much they could do, too. There were certain times they’d lack just doing the basics for people. In some prisons, they have only a couple areas and limited beds for people on hospice could go. It’s also just not having nurses who are trained specifically for hospice care in prison settings. I think what’s necessary is having at least one hospice person at every prison to provide the necessary care that incarcerated people can’t provide or aren’t supposed to do.”
Few prisons in the United States have hospice programs that are well-staffed, according to Lisa Deal, executive director of the Humane Prison Hospice Project. The California-based humanitarian organization helps train incarcerated peer caregivers in providing end-of-life care support.
Part of the understaffing issues is that geriatric populations are swelling “dramatically” in prison settings, with more seniors facing the end of life behind bars without access to hospice services, Deal stated.
Seniors 55 and older represented 15% of the state and federal prison population in 2021, swelling five times past 3% in 1991, according to a report from the Prison Policy Initiative.
Widespread workforce shortages have hospices grappling with the ability to spread strained clinical staffing resources among prison populations, Deal said.
“What’s really at the root of humane hospice in prison is just trying to train these peer caregivers as hospice providers face competing demands for their care in the outside world,” Deal told Hospice News. “It’s about increasing access to care and being able to expand these training programs using caregivers who are really focused on the needs of folks at the end of life in prison.”
Providing caregiver training among incarcerated individuals can increase access to hospice and improve quality outcomes, she indicated. An important part of this training is familiarizing peer caregivers with the nature of hospice care and how this support differs in prison systems compared to other settings, Deal said.
Serious and terminal illnesses can have very different trajectories among incarcerated seniors, especially for those with mental health and addiction issues that can require additional care and support, she stated.
Dementia, trauma and chronic stress are the most common health issues among much of the country’s prison population, the National Institute of Corrections reported. More than 3,000 individuals with these conditions die annually in prison.
“We tend to see people age faster with more physiological and medical needs when they’re behind bars,” Deal said. “Training caregivers can provide a lot of hands-on care alongside nurses, and it can be very tailored towards prison populations that often have very traumatic experiences around death.”
In addition to expanded training, more investment is needed to build structural support systems for dying incarcerated individuals, according to Garlock.
“More money is needed for hospice support behind bars to where it can provide some sort of comfort and peace to dying people,” Garlock said. “Hospices also really need a better understanding of who these people are, what abuses they may have endured and how to help them cope with those experiences. It’s taking risks to take care of these people. Someone on their deathbed isn’t much of a threat to society.”
— “You may have feelings of dread, guilt, hopelessness, despair and overwhelm”
By Hannah Millington
We’re slowly starting to talk about grief more, partly due to the pandemic and partly thanks to evolving attitudes around sharing our experiences with mental health, in all its forms. But the term ‘anticipatory grief’ might possibly still be a new one for you – even if it’s likely that you personally, or someone you know, has experienced it.
While anticipatory grief – which focuses on our feelings before a grief-inducing loss, rather than just after – can be challenging and exhausting, there are ways to cope and support services out there.
But, before we dig deeper with the help of two trusted experts, we want to acknowledge off the bat that grief looks – and feels – different for everyone, and there is no such thing as experiencing it the ‘right way’. And the same goes for anticipatory grief, too.
So, what is anticipatory grief? What are the signs of it, and how can you put coping mechanisms in place? We asked the experts…
What is anticipatory grief?
“Anticipatory grief is the grief felt before an impending loss, typically someone dying,” says registered member of the British Association for Counselling & Psychotherapy (BACP), counsellor Lisa Spitz.
However, Spitz explains that this ‘impending loss’ can also apply to non-death related situations, like divorce, or the scheduled removal of a limb or breast due to health reasons. The defining factor is that it is a big loss of some sort, that you anticipate will happen and that will drastically change your life.
In some cases, anticipatory grief can begin years before the loss occurs (though it may also just be a matter of days beforehand).
“It could be someone living with a dying spouse,” says the expert. “You may have feelings of dread, guilt, hopelessness, despair and overwhelm. It can include wondering and, in some cases, planning what life would or could look like afterwards [once they’ve passed].” All of which can be really tough to process on an emotional and practical level.
What are the signs of anticipatory grief?
In a nutshell: anticipatory grief is a term for the feelings that occur before a sizeable loss, which can range from dread to anxiety to despair, and can also be accompanied by physical elements, such as trouble sleeping, loss of appetite or feeling like you have a racing heart. It’s similar to grief itself, in that there are a myriad of ways it can present itself – and like each loss, each person experiencing it will do so in a unique way.
Expanding on the above, Spitz explains that in the case of losing a loved one that “there is often an overwhelming and sometimes paralysing concern for the dying person, a constant running order of how the death might look and plans to be made, as well as an attempt to adjust to life without them. It can feel overwhelming, exhausting and anxiety-provoking.”
It seems uncertainty is a big part of what can make anticipatory grief so taxing, and being unable to know for sure how your future might look.
If you’re experiencing feelings of anticipatory grief, one helpful first step can be simply acknowledging those emotions – and actively choosing to go a little easier on yourself: you’re not just ‘waiting’ or ‘preparing’ to go through a tough time, knowing that one is on the horizon is tough in itself too, and you deserve support now (and later down the line, once the loss has happened).
Why does anticipatory grief happen and do people’s experiences differ?
Much like grief itself, while anticipatory grief is a natural part of loss, there’s no one set way that it plays out, or one particular way that it looks.
As Jane Murray, counsellor and Bereavement Services lead for Marie Curie, Midlands, explains, “Very often relatives and carers have a feeling of helplessness or lack of control – particularly as the dying phase approaches – as there is nothing they can do to ‘stop’ the dying and all the decision-making is being done by the professionals. They then often feel increased anxiety and stress as they witness the actual dying.”
She adds that tensions can also be high when someone is dying, and it can place a lot of pressure on someone to say goodbye in the ‘best’ way possible, when they’re already dealing with so much.
“Some people may also feel judged by others in that they are not at the bedside often enough, or crying enough, or doing enough. They may feel guilty for taking a break or time out,” adds Murray. “This can cause an enormous amount of pressure which increases anxiety and stress. Just like a pressure cooker, that stress which is building has to be released or it may explode into anger or emotional outbursts.”
>With that in mind, we should feel entitled to reduce the pressure on ourselves to be ‘perfect’ when caring for or visiting a dying relative, who also may not be their usual selves.
“Guilt is a huge part of grief and because people are emotionally and physically exhausted, they can also expect to be short-tempered and emotional. All these feelings and behaviours are ‘normal’ at this time,” stresses Murray. “There really is no perfect way to react at such a time – there is only your own unique way. Normalising feelings and behaviours goes a long way to relieving anxiety at this time.”
These feelings can vary greatly, and might not always be ones of obvious compassion, which is okay. “Anger is also a big part of grief and to be expected – anger at the professionals for not doing a better job or curing the patient; anger at family and friends for not being there enough or being supportive enough; anger at themselves for not being ‘a good enough wife/daughter/son’.”
“Although seldom admitted, there can be anger at the patient themselves for dying and leaving them alone. Just like all the other emotions at this time anger should not be discouraged, it needs to be expressed in a safe way.”<
Other experts also highlight that anticipatory grief might be a positive, in its own strange way. “It allows some people to access the grieving process before it happens and potentially allow them to feel more prepared,” says Spitz. “Long illnesses often allow for time to say ‘goodbye’ and have that acknowledged.”
What are the different stages of anticipatory grief?
“Clients I encounter in my practice, often believe you must go through the stages (like denial, anger, bargaining, depression and acceptance) in order to grieve ‘properly’ but this is untrue,” says Spitz. “You may go through multiple stages, or none at all. It is not linear and ‘stages’ may be revisited more than once and that’s also okay.
“We need to normalise that grief – to quote the late Queen Elizabeth – is the ‘price we pay for love’, and instead of expecting people to be over their grief [by a certain date], we should acknowledge that it becomes something we live with, a part of our fabric. We will always grieve but the goal is that it becomes less raw and overwhelming.”
So, with that in mind, it may prove useful to approach anticipatory grief by keeping in mind the types of feelings you may experience (dread, guilt, hopelessness, despair, overwhelm, anxiety, preparing, taking control, saying goodbye, etc), rather than anticipate any set order that they might arise in. Feelings can also repeat, even once you felt you’d ‘dealt’ with them.
How does anticipatory grief affect our experience of grief itself?
It’s likely that for most people anticipatory grief will be followed by grief (though not always, loved ones could make an unexpected recovery, for example). So for those who’ve had the chance to prepare, or expect the loss, what difference does this make to our processing?
“I think that this is an interesting question,” admits Spitz. “It’s almost like if we grieve before, can we not grieve when the person dies or the divorce happens or the breast is lost? The truth is they are different. I believe that if you have the opportunity to say goodbye to a dying loved one and they have been ill for a long time then it is a very different experience to a sudden death. The same is true to a relationship that you can see is ending, as opposed to your spouse one day saying it’s over. Or breasts removed because they are diseased and can be lifesaving.
“You can process so much but actual grief can only happen when the ending, whatever that is, has happened. You can believe and plan to think/feel one thing but actually feel something else completely (when it comes to it).”
How can you cope with anticipatory grief?
Anticipatory grief can go on for a while, or possibly have some back and forth – for those dealing with changing situations. But whether you experience it for five days or five years, support is out there.
Reach out for help
Be it with emotional or practical support (e.g. if you’re caring for an ill loved one, is someone else able to assist you with household chores for a bit? Can a charity, like Marie Curie, support with some counselling? Is there a local or online support group for others preparing to mourn the loss of a body part?).
Writing down feelings
“Journaling also helps,” says Spitz. “By externalising our internal thoughts and fears it helps to acknowledge and work through some of them.”
Practice self-care
If you’re looking after a dying loved one, this can also take its own toll. “For care givers, their own mental and physical health can suffer and looking after themselves is no longer a priority, adding to the feelings of overwhelm,” says Spitz. This makes it even more important to seek professional help or vocalise your feelings and needs to those who can listen.
Know that however you feel, it’s ‘normal’
In addition to urging us to take the pressure of ourselves to be ‘perfect’ during this time, and accept all the emotions that come our way, Murray adds: “Grief is very individual to the person – no two people will grieve the same even in the same family. There is no right way to grieve, your grief is unique to you.”
— NPR’s A Martinez talks to Ben Marcantonio of the National Hospice and Palliative Care Organization, about in hospice care, how the focus is not about preparing for death, but for living a full life.
A MARTÍNEZ, HOST:
What does it mean to offer compassionate care for people facing the end of life? And how can someone face the final moments in peace, comfort and grace? Well, many people have asked questions just like that since former President Jimmy Carter opted for hospice care more than six months ago. Ben Marcantonio is interim CEO at the National Hospice and Palliative Care Organization.
BEN MARCANTONIO: His son recently in an interview shared glimpses into the way in which President Carter and First Lady Rosalynn Carter have been sharing moments together, opportunities to be with and pray with family and friends, to enjoy his favorite ice cream, peanut butter, and that he’s been able to live and not be returning to hospital visits or to be going to all kinds of medical appointments outside of his home to seek cure, but rather to really focus on his quality of life and how he wants to spend that time until his death.
MARTÍNEZ: In an American culture that often shuns even the thought of death and dying, Marcantonio says hospice is also about living.
MARCANTONIO: Choosing hospice is not necessarily an end to life or giving up on hope. It’s just redefining hope and helping navigate a stage of life that is unfamiliar to us because we’ve never walked that course.
MARTÍNEZ: Providers say that’s about bringing respect and dignity to final moments. For example, Keisha Mason – she’s the executive director of Heart’n Soul Hospice in Nashville. It’s a Black-owned hospice dedicated to caring for people in underserved communities.
KEISHA MASON: We have a patient on service right now who has dreads almost to his knees, probably about the longest dreadlocks I’ve seen. So, like, once a month I go over, I wash his hair, and I retwist his hair. And his mother almost cries every time that I go do that for him. And she’s like, why do you do this? My kids have dreads, and I know what that is. It takes some work to get it done, but it’s what I need to do for him to give him back his quality of life.
MARTÍNEZ: It’s also about bringing what Mason says is her authentic self to extraordinarily challenging work.
MASON: Most of us who are in the hospice will tell you that we didn’t choose to go into hospice care. Hospice plucked us out from where we were and said, no, this is where you need to be.
MARTÍNEZ: Michelle Green is from Lufkin, Texas. That is where her mother, Barbara Carroll (ph), is in hospice care.
MICHELLE GREEN: This experience is honestly just full of blessings and heartache. I live in the same town as my mother. She is 89. And it is such an emotional and physical drainage to just watch a loved one declining. So for us, being able to turn to that caring professional – it’s such a relief just to know that we’re not alone.
MARTÍNEZ: That first day – what was that first day like?
GREEN: It was very emotional. You know, it’s tears of joy. It’s tears of sadness. We just had to trust and know that it was the right thing to do.
MARTÍNEZ: The hospice they turned to is Hospice in the Pines, where Demetress Harrell is the CEO.
DEMETRESS HARRELL: I think one of the biggest concerns that I hear from most families is how long will they have on hospice? And so giving them the comfort in knowing that in no way, form or fashion will this decision hamper or hasten their life expectancy gives them great comfort in knowing that the compassionate care will be to do everything we can to enhance the quality of life.
MARTÍNEZ: How often do you sense or hear guilt from a family?
HARRELL: So the guilt comes from did I do it soon enough, or did I do it too soon? I have cards even in front of me now that indicate it was the best decision we could have made to ensure that mother or father or sister or brother or even child received comfort and that the presence of you all being there, making decisions that I could not and handling the heavy lifting made a significant difference. And you all are angels in our lives, and you will be forever. And so I hear most of the time I wish we would have done it sooner.
MARTÍNEZ: Demetress, when we hear that someone enters hospice, it tends to be followed by a sense of sadness. Like, that’s it. OK. This is the end of their life. And you made it a point to say that this isn’t just necessarily about someone’s end of life, but it’s about their life and living.
HARRELL: When we get a terminal diagnosis, it is hard for us to wrap our hands around it. When we come on hospice, we realize that it’s considered a good death because the person is not laying there suffering. And so you can only imagine what life would look like and death would look like without hospice holding your hand.
MARTÍNEZ: Michelle, what’s your mother Barbara’s experience been like? When you’ve talked to her, what has she said about it?
GREEN: You know, it’s just finally giving them the help and letting them realize they don’t have to do it alone. Mom looks forward. Whether it is her nurse that is coming or a CNA that’s coming, she looks forward to those visits and is honestly developing a friendship with the individuals.
MARTÍNEZ: So, Michelle, what would you say to people listening that are thinking about this decision, either family or the person that might be going into hospice care? What would you say to them about this whole experience?
GREEN: I would encourage them to take that plunge, to take the guilt out of their decision and realize that they are doing what is best for their loved one. They are providing them with professional and caring care. And like Demetress said, let the daughters be a daughter. Let the sons be a son. Let the family enjoy being with their parent or whoever needs care and turn that professional care over to people who are trained in caring and let you be the loving family or friend to just support them.
MARTÍNEZ: Michelle Green is in Lufkin, Texas. Her mother, Barbara, is in hospice care. And Demetress Harrell – she’s CEO of Hospice in the Pines in Lufkin. Michelle and Demetress, thank you very much.
Theresa George, known to most as Ani, says she has no fear of dying but does have a fear of how she dies. She has a degenerative, incurable condition, and when her defences are down, the upsurge of stress and anxiety can at times feel overwhelming.
“I can have panic attacks,” she said. “All of my effort at this point is on trying to keep a positive mental attitude and enjoying what life I have left.”
George, 63, has lived for 20 years on the west coast of North Uist in the Outer Hebrides with her partner, Maire Coniglio. Originally from Maine in New England, George had been working in home care when late last year she was diagnosed with motor neurone disease.
“When I came home and told my partner, she said ‘No, no, no, it can’t be that,’” George recalled.
The progressive disease began with loss of mobility in her left ankle and foot; it spread to affect her leg and now her left side is subject to tremors and weakness. A trained massage therapist, George now uses a motorised wheelchair.
Living with accelerating physical deterioration, she has the very real fear of “being trapped in my own body”, she said. “I’m slowly watching myself deteriorate, really, and it just brings up all that anxiety and fear and the stress of it all. I don’t have a fear of dying but I do have a fear of how I die – I think most people can relate to that.
“I don’t want to die but more so, I don’t want to suffer.”
George considered travelling to the Dignitas assisted dying clinic in Zurich. Faced with the significant costs of doing so – estimated by the pro-assisted dying campaign group Dignity in Dying at about £15,000 – and the logistics of travelling there, she quickly dropped the idea.
For her, dying at home on her own terms would be far preferable than the added stress of dying in an anonymous room abroad. “To have that at home, with people that you love around you, that would be amazing,” George said.
Suzie Mcallister, whose husband, Colin, died this year.
Suzie McAllister, 47, a primary school teacher in Fort William, empathises. She cared for her husband, Colin, a very fit and active climber and kayaker, as he died in enormous pain from an aggressive and untreatable stomach tumour earlier this year.
The sedatives and pain relief he was given simply failed to alleviate his suffering and distress, she said. The cancer made it impossible for him to eat. He would wake up crying out in pain.
For McAllister, it is incomprehensible the law cannot allow someone in that degree of pain to voluntarily end their suffering. Colin considered Dignitas; towards the end, he pleaded for her to find the drugs to end his life on the internet.
“He had no control, no right to choose, and that’s what made him angry” she said. “You can’t tell me that the way Colin died was moral in any way. The autonomy, the will of the patient, has to be considered.
“It wasn’t tolerable, not for me having to watch it and certainly not for him.”
