At New York hospital, a friar watches over those dying

‘The miracle is to let go’

Brother Robert Bathe, a Carmelite friar, outside of Bellevue Hospital in Manhattan.

By Kevin Armstrong
The morning after he turned 52 last month, Brother Robert Bathe emerged from the Millennium Hotel on West 44th Street. He ambled half a block into Times Square and reflected on the emptiness. A street cleaner’s whoosh broke the silence.

Dressed in a brown robe, the traditional garb of his Carmelite order, Bathe began his daily walk down Broadway. At 28th Street, he hooked left and continued to Bellevue Hospital, where he is a Roman Catholic chaplain and bereavement coordinator.

“Welcome to ground zero,” he said before a nurse trained a thermometer gun on his forehead and scanned for a reading.

It read 98.6. The nurse nodded.

“Normally,” he said, “the family is there with me bedside at death, and when we say the Our Father it is very emotional. Now I stare at a person that is taking their last breaths. I’m with a doctor and a couple of nurses. We’re saying goodbye.”

Bathe is the friar on the front line of the coronavirus pandemic. A native Tennessean who was a soil scientist before entering religious life at age 27, his Southern accent is the first voice many patients’ family members hear from the city’s oldest hospital when he calls to inquire about special needs.

Each morning, he reviews death logs. He then walks through the emergency department and intensive care unit, where he stands behind glass and cues up music on the smartphone he keeps in his pocket. “Bridge Over Troubled Water” is a favorite selection. On Funky Fridays, as he calls them, Bathe mixes Benedictine chants with James Brown. If patients are awake, he flexes his biceps or pumps a fist — encouragement to stay strong. He takes precautions when praying over the intubated, slipping on an N95 mask and face shield. In all, he ministers to more than 25 patients daily.

“Music gives a little more sense of sacredness so I don’t get distracted by nurses and doctors screaming,” he said. “I am focused on that patient, looking at that face. I know who that person is, imagine what it is like for them to be alive.”

Bathe speaks with a man across the street from Bellevue Hospital. He says he was called to become a friar more than two decades ago after witnessing a man die in North Carolina.
Bathe greets people in the Mount Carmel Place courtyard near the hospital. The coronavirus continues to paralyze New York and stretch the limits of its hospital system.

His pager pulses with death updates. It is programmed to receive alerts for cardiac emergencies, traumas and airway issues. Whenever a coronavirus patient on a ventilator needs attention, it comes across his screen twice. When a nurse who worked in the neonatal ICU died of covid-19 recently, Mary Ann Tsourounakis, Bellevue’s senior associate director of maternal child health, called pastoral care for help. A group of nurses grieved. First to arrive was Bathe, who led them in prayer in a small hallway.

“One of the most healing and loving I’ve heard,” Tsourounakis said. “People think it has to be a big production. Sometimes those moments are the moments.”

The virus continues to paralyze the city and stretch the limits of its hospital system. Confirmed cases have surpassed 185,000 and more than 20,316 deaths had been recorded, according to the New York City Health Department.

Bathe’s path to New York began in Knoxville, Tenn. He grew up around his grandfather’s cattle farm, went on frequent hikes as an Eagle Scout and eyed a career as a forest ranger while a teenager. His mother, Linda, worked at the University of Tennessee, and she consulted with faculty members about her son’s future in forestry. Prospects were slim, and alternate paths — archaeology or agriculture — were suggested.

He didn’t see himself traveling to Egypt to unearth tombs, so he dug into agricultural studies and toiled with botany and geology as well. Following graduation, he worked for the Buncombe County environmental health agency in North Carolina. Hired to protect groundwater, his release was to drop a line in honey holes for catfish, pitch a tent and listen to bluegrass songs after dark.

One day, Bathe was sent to meet a man named Robert Warren to evaluate his soil so he could build a house. When Bathe arrived, he saw Warren slumped over in his truck. As Bathe approached, he said, Warren grabbed his hand and asked, “Would you pray with me?”

They recited the Lord’s Prayer, he said. Moments later, he was dead, Bathe recalled. Bathe accompanied him to the hospital and attended the memorial service and funeral.

Bathe joined the Carmelites soon after, and in 1997 was assigned to Our Lady of the Scapular and St. Stephen’s Church, two blocks from Bellevue. Lessons followed.

One day, he said, a woman fell from her window in a neighboring building and through the church roof. Bathe was sent up to investigate.

“First dead body I ever smelled,” he says. “Life is tender.”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

Transfers are part of the friar life. He taught in Boca Raton, Fla., and served as the vocation director from Maine to Miami before returning to Manhattan two and a half years ago.

In ordinary times, Bathe receives a monthly allowance of $250, lives in the St. Eliseus Priory in Harrison, N.J., and rides the PATH train. He fell ill in January, experienced the chills, registered a temperature of 101 and lost weight. He believed it was pneumonia then and self-isolated, using a back stairwell to his room. His brothers left meals outside his door, and he returned to Bellevue after convalescing. He has yet to be tested for covid-19.

Since March 30, the hospital has facilitated his participation in a program that provides free or discounted rooms for front-line workers, first at a Comfort Inn on the west side of Manhattan and now at the Millennium, to limit his commute. Along the route to work, his bald head, eager gait and hearty laugh are known to mendicants and administrators alike.

He carries on the tradition of the Carmelites, who have ministered at Bellevue since the 1800s, through periodic epidemics, saying Masses from the psychiatric ward to the prison unit. Colleagues include a new rabbi and a 20-year-old imam.

When a Catholic dies, he performs the commendation of the dead, a seven-minute service. His responsibilities range from distributing Communion to finding prayer books for patients across faiths to leading memorial services for staff. He is “staunchly against” virtual bereavement, which has become common amid the pandemic, insisting on providing a physical presence.

“People are looking for a miracle when the miracle is to let go,” he said. “Call me too practical, but I don’t pray they leap out of the grave like Lazarus. I think we’re meant for better. We’re meant for God.”

Hospital staffers are processing what has happened since the pandemic first gripped New York, and they’re bracing for a potential second wave. Since Lorna Breen, medical director for the emergency department at NewYork-Presbyterian Allen Hospital, died by suicide last month, Bellevue has increased its support services for employees. Questions about closure come from all mourners.

“Families ask, ‘Are we going to be able to have our loved one go to Mexico?’ ” Bathe said. “How are we going to do the next step, to bury our loved ones?”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

On a recent Sunday, Bathe stepped outside for a breather in what some people call Bedpan Alley, the east side neighborhood that includes hospitals and a shelter on First Avenue. He checked on a homeless woman who sits in a chair facing Bellevue each day, rubbing his thumb against hers as she slept. A shoeless man was prone on the sidewalk. Bathe inquired about a can collector’s economic concerns. Business was slow.

“Are you a priest?” a woman on a bench asked Bathe.

“No, ma’am,” Bathe said. “I’m a friar.”

She introduced herself as Shonda. She was anxious about a meeting with her manager.

“You want to say a prayer for me?” she said.

“Put the phone down,” he said.

Bathe closed his eyes and prayed.

“Breathe,” he said.

“I’m going to breathe,” she said.

As he walked back to the hospital, his pager went off. “Cardiac Arrest,” it read, “10 West 36.”

“Somebody’s dying,” he said.

Bathe makes his way to the hospital from his hotel in midtown Manhattan.

Complete Article HERE!

Now more than ever we need to talk about how we want to die

Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too.

By Dr Anushka Aubeelack

The coronavirus pandemic has brought death and dying to the forefront of the public’s consciousness.

As an anaesthetist working in a London intensive care unit, it is part of my daily life. Within a matter of weeks it has become everyone’s business.

Throughout my career I have been involved in the care of critically-unwell patients. All intensive care doctors accept that in spite of our best efforts, some people will not survive.

Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too, so they may die without discomfort. This is true of any intensive care ward, at any time, but Covid-19 has further highlighted the importance of good end of life care, as we are seeing record numbers of very unwell people admitted to the hospital.

When the intensive care team is called to admit a patient, we try our best to establish their wishes with regards to treatments.

Have they thought about intensive care and life support? If their heart or breathing was to stop, have they thought about whether they would want the medical team to attempt cardiopulmonary resuscitation, for instance?

Whenever we can, we explain clearly what the treatment options are and the risks and benefits of each; we ask them what their own priorities are and answer any questions they may have. Then we adjust the treatment goals to best suit that individual patient.

But sadly, there are times where this communication is not possible and both the team and patient are robbed of that opportunity. That is why I am so passionate about what is known as advance or anticipatory care planning, or what I prefer to call advance life planning.

This is where people are given the opportunity to talk through their priorities and concerns for the end of life and translate them into a plan for their future care and treatment. This may include a Living Will (a legally-binding document also known as an Advance Decision or Directive) to refuse certain treatments and an Advance Statement to record other preferences for care.

People may also wish to nominate a trusted person to make healthcare decisions for them if they become unable to, using a Lasting Power of Attorney for Health and Welfare. These documents are then shared with healthcare professionals and loved ones.

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly

All intensivists can recount a story in which, acting in good faith, a patient was put on to full life support, only to subsequently learn from loved ones that this action was against that patient’s end of life wishes.

This is not only heart-breaking for all involved, going against our core belief to ‘do no harm’, but it also denies that person the chance to be kept comfortable in a place of their choosing to say a meaningful goodbye.

This pandemic means we can no longer shy away from death. It is an inevitability of life and conversations about death should no longer be taboo.

It is now more essential than ever to talk to our loved ones about what a good death would mean to us as an individual.

For some, the most important thing might be remaining as pain-free as possible. For others, the priority might be to remain as lucid as possible until the end, or dying in a place of their choosing, whether that is at home or at a hospice, surrounded by their loved ones.

Some may want to accept all efforts to keep them alive as long as possible in spite of the risks. An Advance Statement can record information like this, and while it is not legally-binding like a Living Will, it should be taken into account if decisions need to be made on your behalf about your care and treatment. 

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly. It also assists medical professionals like myself to continue to act in the best interests of our patients by respecting their wishes.

By recording them as clearly as possible now and sharing them with your family and your GP, you will be far more likely to get the care and treatment that’s right for you when the time comes.

Know that if you do want to put plans in place, you are not alone.

The charity Compassion in Dying – for which I am clinical ambassador – aims to help people prepare for the end of life; how to talk about it, plan for it and record their wishes.

The MyDecisions.org.uk free site, which guides people through different scenarios so they can record their wishes for future care and treatment, has seen the number of completed Living Wills in the last month surge 160 per cent compared to the same period last year, and completed Advance Statements are up 226 per cent.

One might therefore conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.

These are unsettling times, but know that healthcare teams in hospitals will continue to work hard to care for our patients, whether that means supporting them to a full or partial recovery or enabling them to have a dignified death.

For those who have already taken the time to document their wishes for the end of life, I am thankful. To those who are thinking about it, I appeal to you to do so.

Complete Article HERE!

When life support is withdrawn, commitment to care must not end

By Timothy M. Smith

Physicians caring for the sickest patients with COVID-19 sometimes have to make the difficult decision to withdraw life-sustaining treatment. However, that painful choice does not obviate a physician’s obligation to provide supportive care to dying patients thereafter.

The AMA has created an ethics resource page, “Caring for patients at the end of life,” that offers expert advice on the ethical and emotional challenges involved. Citing numerous opinions from the AMA Code of Medical Ethics, the page provides a comprehensive guide to eliciting and following patients’ wishes for how they want to die.

More broadly, the AMA and the Centers for Disease Control and Prevention are closely monitoring the COVID-19 pandemic. Learn more at the AMA COVID-19 resource center. Also check out pandemic resources available from the AMA Code of Medical Ethics, JAMA Network™ and AMA Journal of Ethics®, and consult the AMA’s physician guide to COVID-19.

A transition, not an end

“A decision to withhold or withdraw life-sustaining treatment is not a decision to withhold or withdraw care entirely,” the page says. It goes on to quote the Code opinion on “Withholding or Withdrawing Life-Sustaining Treatment,” which requires that physicians reassure “the patient and/or surrogate that all other medically appropriate care will be provided, including aggressive palliative care, appropriate symptom management if that is what the patient wishes.”

Citing the same opinion, the page notes the emotional toll this process takes on everyone involved and recommends establishing the patient’s preferences and setting specific goals for care.

Ideally, patients will have already expressed their end-of-life wishes to their physicians or their surrogates. Often, though, patients haven’t given much thought to the care they will want or not want at the end of their lives. In those situations, per the Code, physicians should “elicit the patient’s values, goals for care, and treatment preferences” and capture those preferences in the patient’s medical record.

If the patient lacks decision-making capacity, the resource page notes, his surrogate may make health care decisions on his behalf.

Read the Code opinion on surrogate decision-making.

Understanding advance directives

If, however, the patient has an advance directive, the preferences set out in the directive should govern care decisions.

“Some physicians think advanced directives are only useful for declining care. They’re not. You can say what you want,” said Elliott Crigger, PhD, director of ethics policy at the AMA. “Now, you may not get it—there may be reasons why it won’t work—but you can say what you wish and how you want to die. And that includes either declining care or asking for care.”

There’s a similar misunderstanding around do-not-resuscitate orders, Crigger noted.

A few physicians may wrongly interpret a DNR order as a sign that the patient also is less interested in other supportive care. “But that’s not what it means,” Crigger said. “It means, ‘Don’t resuscitate me.’ It doesn’t mean, ‘Don’t provide every other kind of supportive care you can.’”

Read the Code opinions on advance care planning and the use of advance directives.

When sedation is appropriate

“When it proves impossible to adequately manage symptoms despite vigorous palliative care efforts, for some terminally ill patients an option of last resort is sedation to unconsciousness,” the page says.

Referring to opinion 5.6, “Sedation to Unconsciousness in End-of-Life Care,” the resource page notes that physicians should reserve this option for patients in the final stages of terminal illness and “ensure that options for appropriate, symptom-specific palliative care have been exhausted, ideally in consultation with a multi-specialty team,” adding that the patient or his surrogate must give informed consent before sedation is administered and the decision should be recorded in the patient’s medical record.

Read about a score-based framework for determining priority access to ventilators and other scarce resources.

Complete Article HERE!

Coronavirus Disrupts Hard Decisions About End-Of-Life Treatment

The coronavirus means more people are dying alone in ICUs. Families are having to make abrupt decisions at a distance about terminal care. Palliative care specialists try to adapt.

By Will Stone

TRANSCRIPT

Palliative care is a specialized branch of medicine that focuses on relieving pain and symptoms in seriously ill patients and those who are dying. Will Stone reports that the coronavirus pandemic has disrupted this kind of care at a time when families are facing abrupt decisions about end-of-life treatment.

WILL STONE, BYLINE: Before coronavirus, Darrell Owens rarely worked in the emergency room. Now he’s there daily. Owens is a nurse practitioner and directs the palliative care program at a hospital run by the University of Washington in Seattle. Owens used to visit with families in quiet conference rooms or at the bedside.

DARRELL OWENS: Cancer patients, stroke – regular routine palliative care patients.

STONE: Back then, he could grab a chair and scoot up right next to the patient and take his time. Palliative medicine focuses on patients’ quality of life and relieving symptoms of serious illness, like pain and anxiety.

OWENS: We are obligated – as much as we are to try to save people’s lives, we are as obligated to save their deaths.

STONE: Across the country, coronavirus has disrupted this sacred task. Owens is adapting. The ER now calls him a lot. He sees every coronavirus patient who’s older or at risk for complications.

OWENS: The conversations are more abbreviated than they would be because, one, you’re behind a mask. You’re in a loud room, completely gowned up, and so you want to limit your exposure.

STONE: All that makes it harder to talk through a patient’s chance of survival and big questions, like do you want to be resuscitated? Do you want to be put on a ventilator? Because of the pandemic, relatives are usually barred from the hospital.

OWENS: You cannot underestimate the stress on family members who cannot visit and now, in a crisis mode, trying to talk this through over the phone.

STONE: It’s this painful new reality that Rich and Rob Mar and their sister Angie Okumoto faced when they lost both of their parents to coronavirus last month. Their mother Elizabeth was in her early 70s, still running a Hawaiian restaurant with her daughter. Rich says she liked to give out hugs.

RICH MAR: One of those people that just quickly made friends and made an impression on everyone.

STONE: They say their mother was in good health before contracting the coronavirus. They brought her to the ER when her breathing got worse. She was asked, did she want to be resuscitated, if necessary, and put on life support? Angie says they didn’t hesitate to say yes.

ANGIE OKUMOTO: You know, yeah, of course. We just had no idea what this virus was going to do.

STONE: They just assumed she would pull through.

MAR: I didn’t know that was the last time I was ever going to talk with her.

STONE: Before they knew it, she was sent to the ICU.

OKUMOTO: For 14 days on the ventilator, she was alone.

MAR: Right. Right.

OKUMOTO: Alone for 14 days.

MAR: That’s the part that hurts the most and what will haunt me forever.

STONE: Near the end, they did get to see her, but she was sedated.

MAR: We were all gowned up. And so we’re, like, trying to talk to her and let her hear our voices.

STONE: Meanwhile, their father Robert was also getting sick. He was 78, an engineer.

MAR: My dad was more of the analytical type. He can give you a practical solution for everything.

STONE: They took him to the same hospital as his wife, where he made his wishes very clear.

OKUMOTO: My dad, from Day 1, he said he did not want to be on life support.

STONE: So Darrell Owens, the palliative care director, started managing Robert’s care.

MAR: He was super compassionate, telling us the facts and being straightforward with us.

STONE: Because Robert had decided against aggressive treatment, he was never moved to the ICU. He was able to have a few visits with his kids, and he wasn’t on a ventilator, so they could talk to him and text. Their father died on March 27, not long after their mother.

MAR: The way he wanted to.

OKUMOTO: With dignity.

MAR: With dignity, yeah. That was very important to him.

STONE: The family is grateful to the nurses and doctors. Still, they grieve those visits they never had. Angie never got to say goodbye before her mom was intubated.

OKUMOTO: If I got to be bedside to my mom earlier, holding her hand and just being present – and that we’ll never know, right? Like, that’s what sucks.

STONE: It’s an experience of death that more families are coming to know – loved ones dying alone and out of reach from a new and poorly understood virus. In New York City, Dr. Diane Meier works in palliative care at Mt. Sinai School of Medicine. During the worst of the surge, the hospital set up a palliative care hotline for families.

DIANE MEIER: So this is completely unprecedented. All the cues you normally get with face-to-face are very hard to pick up over the phone.

STONE: Mt. Sinai doctors are even calling elderly patients at home to learn their wishes just in case they do get infected.

MEIER: Many of our patients had been thinking about it a lot, incredibly relieved that we had reached out to them.

STONE: Meier says it’s a new way of doing palliative care when faced with a virus that moves so fast. For NPR News, I’m Will Stone in Seattle.

Complete Article HERE!

COVID-19 Answers

A Two Part Interview with Dr. Diane Meier

Everyone is worrying about what to expect and how to prepare for COVID-19. After all, we know so little and there is still no treatment. In two interviews with Dr. Diane Meier, director of CAPC (the Center to Advance Palliative Care), ARCHANGELS Co-Founder and CEO, Alexandra Drane, gets at the core of what’s waking us up at night, including how do we make decisions and how do we actually feel human instead of just medical specimens. Diane makes us feel more in control and feel better about our COVID19 worries… she clears up confusion, addresses the fears many of us have, recommends three things we can all do right now to be prepared–and she makes it not scary. We can all feel good about telling a friend to watch these videos.

To learn more from about palliative care resources, go to www.getpalliativecare.org and https://getpalliativecare.org/whatis/disease-types/covid-19-and-palliative-care/

To learn more about ARCHANGELS, go to www.archangels.me and https://www.archangels.me/covid-19-resources

Deciding who lives and who dies

By Dr. Morhaf Al Achkar

I could soon be the physician following a policy that determines who would be denied medical care. At the same time, I could be one of those forbidden care if I needed it.

Medical leaders in Washington state quietly debated a plan to decide who gets care when hospitals fill up. Not many details are out, but the arguments echo a similar discussion in Italy, where an intensive-care unit protocol withheld life-saving care from certain people. The rejected were those older than 80 or who had a Charlson comorbidity index of 5 or more. With my diagnosis of stage IV lung cancer, I score a 6!

When I read the news, I was morally troubled, enraged and mortified.

I am in the same boat as many colleagues who have health issues or are older and could be asked to return from retirement or work accommodation to help out. Are we asking individuals to risk their lives, but will refuse them treatment if they get sick?

I am not familiar with empirical, objective evidence to support setting a threshold for who should or should not receive care as a way to improve outcomes for a community. Research to answer such an empirical question would have been unethical to start with. Using such a strategy also misuses predictive tools.

Age or the Charlson comorbidity index can help give an estimate of prognosis. But they cannot tell us how an individual person would fare in response to treatment for COVID-19. And if we want to decide who receives care, how can we forget about functional status, quality of life, and the person’s values and preferences?

Besides, the risk of eroding people’s trust is intolerable. The last thing we want is for people to lose confidence that they will be treated fairly just because of their health conditions or age. Do we intend to make such policies available to the public, or do we keep them secret so only people with privilege will know about them?

This is not the story we want to leave for history. And who said that an order from a health authority takes the moral burden off your shoulders? Have we forgiven the doctors in Nazi Germany who experimented with vulnerable patients? We humans carry moral responsibility for our actions. If anything, blindly following an unjust order doubles the burden. Worse than doing what is unjust is not standing up to advocate for the vulnerable. What will be remembered is that we pacified our consciences with a piece of paper we called a “policy.”

We can do better.

Restricting people from accessing care is not the only strategy. We can continue to shift resources to optimize the work. For example, a generalist can lighten the load for the specialist. A well-trained practitioner can supervise a less-trained one. Since the epidemic is not hitting every U.S. city with the same intensity, sick people can be moved around.

If we think we cannot save everyone, let’s invite people to have conversations about death and dying. Patients and their primary-care doctors should discuss advanced directives. The patient can sign a do not resuscitate order. People could even embrace death with dignity if they live in a state that allows it.

I can make the choice to not live and forfeit my right to care. But that right cannot be taken from me. Age or health conditions cannot alter a person’s entitlement.

We can trust doctors’ abilities to make the right moral decision, and we can give them the authority and support in so doing. In today’s hyper-complex context, medical doctors should be competent to manage, case-by-case and situation-by-situation.

Yes, it will be a difficult time. When a decision has to be made between two lives, we regret having to make the decision, and we express our deep sadness. We should not make such unfortunate decisions a norm, and we should not write a policy to make it OK. It is not OK, and it will never be.

The healthcare system has a terrible track record of failing various marginalized groups. But we do have a good track record of providing exceptional care to people. Let’s take the opportunity to do it right this time and not miss our chance, because if the public perceives a failure on our part, their trust will take decades to regain.

Complete Article HERE!

Providing emotional support to people at the end of life and their families

How can social workers address difficulties in communication and help promote openness between professionals, service users, their family and other carers?

By

All social workers may occasionally need to become involved in end-of-life care, even when most of their work lies in other fields. This may arise, for example, when a service user or a member of a service user’s family has a sudden fatal accident or commits suicide, or becomes aware that they or a close relative or friend is dying.

Practitioners may sometimes worry about being pitched into end-of-life care unexpectedly because it disrupts existing plans and may lead people to express powerful emotions. As a result, the situation or emotions may seem frighteningly out of control; indeed, this is one of the fears that many people have at the end of life.

Social workers can play a key role in responding to service users’ and carers’ feelings of uncertainty and lack  of control. We can also address difficulties in communication and help promote openness between professionals, service users, their family and other carers.

Communication is key

A common issue in the dying process is the extent to which service users and family members and friends are aware that they are dying; awareness develops through communication. Death and dying are often hidden in our society and are medicalised, separating them from everyday life.

Many people regard openly discussing someone’s death with them as inappropriate. This attitude may be characteristic of some people in older age groups and is also associated with the cultural expectations of some minority ethnic groups.

To help people and families with the end of life, practitioners need to be able to talk with them, and most people working in end-of-life care aim for openness. However, even if the person accepts that they are dying, some prefer not to talk about it, and their approach must be respected.

A useful approach to openness is to start from the service user’s or carer’s perspective. You can ask: “Can you bring me up to date on what you have been told by…(the doctor, nurse)?” It may also be useful to get a picture of their own assessment of their illness, and ask: “Have you noticed any changes in your condition?” Later in a serious illness, you could ask how they assess changes: “Would you say you are weaker today than last week?” To get a picture of how realistic their view is, you can ask: “What has happened that makes you think that?”

Being informed of a short prognosis often leads to a change in mood. Depression arises from focusing on the potential and actual losses, and anxiety arises from seeing the prognosis as a threat to plans for the future and relationships. Crisis theory (Golan, 1978) suggests that it may help if you can stimulate a sense of challenge, helping people to think through what they want to do with the short time they have left, reordering priorities. If you identify depression or anxiety, you could also refer the service user for medication to manage symptoms.

Completing ambitions and tasks

Although someone may know they are facing death soon, the end-of-life phase is often characterised by uncertainty: people do not know what is going to happen to them, or the timescale. Some people maintain hope by denial, but this may be unhelpful for them if they have tasks to complete, for example, writing a will or making care arrangements for their children after death. All hope contains a rational element, in which people look at the realities of their position, and an emotional element, in which they express aspirations or expectations.

People may wish to complete ambitions, such as swimming with dolphins, or taking a last holiday. They may wish to visit previous homes or favourite places. You can suggest possibilities to them if they have not thought of any.

Social workers can support the following aspects of emotional and psychological care:

  • managing the practical and emotional consequences of increasing frailty, a progressive condition or a life-threatening illness;
  • enabling dying people, their carers, families and communities to express and deal with emotional responses to the ‘bad news’ of a short prognosis and subsequent bereavement;
  • helping people look forward to opportunities remaining to them in their life, and helping them to live their life within their family and within a community;
  • helping people complete social and relationship ‘tasks’ (see box) and making other preparations for death;
  • spiritual care (sometimes provided by a minister of religion or chaplain).

Resolving interpersonal issues

Many people wish to complete interpersonal and social tasks in the time available to them, to bring significant interpersonal attachments to a satisfactory end. These are often about resolving four important interpersonal issues:

  • Saying goodbye to important people.
  • Saying “thank you” for care provided and “for putting up with me”.
  • Saying “I love you”, even if there has been a degree of estrangement.
  • Saying sorry for some real or imagined failing, or “I forgive you” for something that has gone wrong in a relationship.

In some cases, people may have become estranged from friends or relatives who are important to them, and it can be useful to ask: “Is there anyone who you would like to know about…(your illness, admission to hospital or care home)?” and to help to approach divorced or separated parents of children who may wish or at least be willing to see the service user for a last goodbye.

Supporting family and carers

Family members and informal caregivers make a significant and irreplaceable contribution to meeting the needs of dying people. Many dying people become increasingly dependent on family, friends and other caregivers for practical and emotional help. This is particularly an emotional labour for caregivers, as round-the-clock care interacts with their own feelings of loss and other priorities in their lives.

Social workers can help by arranging practical supportive services for carers as well as offering emotional and psychological support. This might include adult day care, respite care, home care, and education and social opportunities to improve satisfaction, quality of life, and reduce the feeling of burden. Sustaining families has the secondary gain of also helping the patient.

Preparing fully for someone dying is not possible, but you may be able to help people think through how they want to let go of the relationship, particularly if there have been difficulties with it. You could talk to them about what has been important in the relationship, how they will best remember the service user and the possibility of rituals of leave-taking.

A final cuddle or sexual act may be important. If a visit to the pub is not possible, a favourite beer together may be a substitute.  Information that may help people’s preparation includes: what happens to their body after death, negotiating legal requirements or what sort of funeral they want. Discussing these issues allows negotiation about individual and family preferences to take place. For others, focusing on what to do after someone has died feels inappropriate and contributes to feelings of guilt.

During the dying phase, the social worker’s role is to facilitate family members and carers to participate as they want. People often wish to be present throughout the last few hours, and hospitals and care homes usually call known relatives to the bedside; at home, carers and family members may need to be reminded to do this.

The dying person may disclose unknown relatives and friends, for example, extramarital relationships or estranged family members, and it is often a social work role to make contact. If the dying person and family agree, social workers may negotiate for them to have final contact with these relatives and friends.

It is also useful for social workers to think through their approach to providing bereavement care where a service user they are involved with is coming towards the end of life. The full guide considers different psychological and sociological models and approaches, and when they may be appropriate to use.

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