The Death Doula

Traverse City doula Krista Cain guides people in … and out of the world

By Molly Korroch

“The human brain learns from stories,” says Traverse City birth and death doula, Krista Cain. As she sits with a mug of hot herbal tea at Cuppa Joe in the Village at Grand Traverse Commons, she explains her own story and the not-so-strange duality of her business, Sweetwater Doula, this way: Everyone experiences birth and death. Whether you’re experiencing them directly or through someone close to you, they’re an inevitability. They’re both also mammoth experiences marked by extreme emotion, hospital visits, and ceremony. Each of these experiences, she says, is a wave that smacks our bodies and minds repeatedly back down into the fray. Each is exhausting. But, she asks, “Why not ride [that experience] and let it take you in the direction you want to go? I want my teaching to be a surfboard.”

A doula is not a medical practitioner. A person working as a doula is not a doctor or a midwife; he or, more commonly, she is a guide.

Doula is a Greek word that was appropriated in the ’80s to describe a female assistant,” says Cain, but the definition has since expanded to describe someone who helps others during intimate emotional and physical events. Becoming a doula isn’t something with a hard start or stop, like a medical degree or a teacher certification. It’s common life experiences. “Walking people through life is a softer line,” she says.

Cain’s own line toward becoming a doula wasn’t a direct one. She originally hails from Southern California. She has a background in education and worked as a high school math teacher before coming to Michigan. But when she and her husband, who grew up in Traverse City, moved to northern Michigan in 2011, Cain, who was pregnant at the time, had a jarring resolution: “I’m not here to teach math. I’m here to teach people.”

Her transition into teaching about birth and death began with a certification in the Lamaze technique, which she still teaches alongside her workshops in birth and death. As she taught, she began to see that there were some holes in her personal experience with birth: She had never attended a birth other than her own. Her training as a birth doula began from a desire to offer even deeper knowledge and empathy to her clients.

Likewise, another life experience led her to expand her business to include not only guidance in birth but also in death. In particular, experiencing the death of her young goddaughter showed her how helpful it is to approach death in whatever way makes most sense to the person experiencing it. Death is certain, yet always feels unexpected.

Cain began training as— what she calls — a “death doula” in 2016, with an organization based in California called Bridging Transitions. The mother of one of its founders lived on the Leelanau Peninsula before she passed away in 2016. Cain was able to participate and assist the family during this time. She learned about both the scientific and social nature of death and dying.

Funeral Director and owner of Life Story Funeral Home, Vaughn Seavolt, worked directly with Cain during the funeral for a family who wanted to participate in all aspects of their father’s death. He said he sees a lot of value for both the person passing and the loved ones left behind.

“Having a death doula participate made it very meaningful for the family,” says Seavolt, “I think that it’s very rewarding and very healthy for families who want to participate as much as they want to.”

Cain says birth and death are extremely social experiences, and a doula helps with the social needs and pressures surrounding these major life transitions.

“A doula is a person who is skilled to walk beside you — your family, your partner — to meet your needs as you go through these changes,” says Cain. She will help you and your family in whatever way you need, from deciding what sort of service you want (do you even want a service?) to finding a place in the refrigerator for all the casseroles you’ve received.

“It’s not all about green burials,” says Cain. “You can do this with a body preserved in formaldehyde. You can do this with someone who’s been cremated.” On her website, Cain talks about how the ceremony surrounding the death of a loved one can be exactly what you make of it. It can take place at a funeral home, the hospital, a loved one’s home — whatever makes most sense for your situation. It can have as much or as little religion as is right for you and your family and friends. “There are religious traditions that guide the day, and there are ways you can walk alongside those traditions to serve the needs of the people who are carrying them out,” says Cain.

Most importantly, she provides both information and validation for your personal choices. In birthing and dying, what is right for one person might not be right for another, and that’s OK, Cain says.

Explains on of Cain’s birth clients: “It is also refreshing to hear people talk openly and without judgment about ‘taboo’ topics like postpartum depression and mental health counseling, miscarriage and infertility.”

Cain is adamant about empowering her clients through education. “We have a right to know about this stuff,” she says, “[both the] transformative experience of it and the nuts and bolts.”

A quick internet search reveals that end-of-life doulas are on the rise. There are lots of names for it: “end-of-life transition guide” or even “midwife of the veil,” but Cain prefers to keep things simple and bypass the poetry.

“Right now I straight up say ‘Death Doula.’ The reason I say that is because it’s really reallyclear. I don’t want to have to be that blunt, but we’ve done such a good job at covering it up.”

She’s working to uncover these topics, though she recognizes that it takes a fair amount of bravery to approach them openly. Cain often hosts workshops in both life and death. Who are they for? “Anyone with a life span!” she says, laughing. “If you’ve got a life span, you might at some point want to consider thinking about these things.”

Matters of Life and Death
Want to learn more about Cain, her services, or upcoming workshops? Check out www.sweetwaterdoula.com.

Complete Article HERE!

Doctor seeks to ease fear, anxiety and discomfort surrounding impending death

Dr. Bob Uslander with a patient

By Joe Tash

Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”

To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.

A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.

His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.

While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.

“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”

Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.

“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.

In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.

Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.

Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.

“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”

The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.

Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.

The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.

Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”

Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.

Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.

“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.

For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.

Complete Article HERE!

Looking after a dying loved one at home?

Here’s what you need to know.

Caring can be very rewarding for both the carer and the patient.

By

When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health.

Here are some tips if you are looking after someone nearing the end of their life.

1. Look after yourself

Carers looking after someone with a life-threatening illness have higher levels of emotional distress, including depression and anxiety, than the general population. It’s important you look after yourself.

Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming breathing techniques are practised, or seeking counselling or support groups.

Caring can be very rewarding for both the carer and the patient. Research shows caring can make people feel closer to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life.

It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.

It’s important you look after yourself.

2. Get informed

Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research consistently shows carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication.

Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers report less stress because key decisions have already been made and documented.

Palliative care services often have support groups or information sessions, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also increase self-efficacy (the belief of being able to personally succeed in caring tasks).

Recently, distance learning has been offered to carers and evidence shows this helps them feel more prepared to carry out their duties.

A carer’s emotional tasks might include listening to the patient’s worries.

3. Ask for help

Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as compassionate communities, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues.

Apps, such as Care For Me, and websites can help co-ordinate help from friends, family and the community. The website Gather My Crew offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.

4. Talk about it

When someone is critically ill or dying, family members often decide not to share their worries with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more.

Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear.

Talk about your anxieties.

Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.

5. It’s OK to think about the future

It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers say they feel guilty for thinking about the future or making plans for after the person has died.

But research in bereavement has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.

Complete Article HERE!

We Deserve More Than a ‘Good Death’

The case for demanding end-of-life care that meets our needs

By Amy Berman

If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.

Let me tell you a story to show you what I mean.

At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.

Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.

The Proactivity of Palliative Care

Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.

The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.

Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.

The World Health Organization even recognizes palliative care as “fundamental to improving the quality of life, well-being, comfort and human dignity for individuals” and has called for it to be integrated as an essential element of the serious illness care we receive.

When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.

And that’s the point. We deserve to live out our lives on our own terms.

What Matters to You?

The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.

Improving care for people living with serious illness requires palliative care and — when needed — hospice services.

People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.

Complete Article HERE!

The Nuance of Death With Dignity

Six states allow medical aid in dying, but opinions and experiences run the gamut

By Michelle Carter

Death with dignity is a movement gaining steam.  A June 2017 Gallup poll found that 73 percent of Americans supported medical aid in dying at a patient’s request, as long as it is painless.

Oregon is just one of six states plus the District of Columbia with laws in place that allow medical aid in dying. Doctor-assisted suicide will also become legal in Hawaii in January 2019. In 2018, 23 states entertained death with dignity legislation, and Maine is voting on a ballot initiative in 2019.

While the names of the bills vary — Death with Dignity, Medical Aid in Dying, Medically Assisted Dying — the bills are remarkably similar.

Death With Dignity: The Details

For death with dignity, participation by doctors or nurses is strictly voluntary. No doctor can be compelled to prescribe life-ending medicines, there are no government programs which will provide assistance and there is no database of participating doctors.

To qualify for a prescription for life-ending medications, patients must prove they are a legal resident of the state in which it is legal, be 18 or older, be mentally competent and diagnosed with a terminal illness that will likely lead to death within six months. Patients must also be able to self administer the medication. At least two physicians must determine all criteria are met, and several states with pending legislation require witnesses who are unrelated to the patient who have no financial interest in the patient’s estate.

Physicians must also inform patients of alternatives, such as hospice, palliative care and pain management techniques. Physicians may make a referral for psychological or psychiatric evaluation. The laws and bills also require the patient to make at least two oral requests with a waiting period of at least 15 days (20 in Hawaii) between requests, followed by a written request.

Controversy Still Present

Dr. Jamie Wells, a medical ethicist and a director of medicine for the American Council on Science and Health, said the debate over medically-assisted dying laws is difficult in part because we live in a binary culture which tries to reduce everything to black and white. But the individual situations where a law like this would come into play, she noted, are often gray.

“I wish we had more of an honest portrayal of how things happen in these circumstances. Nuances matter, and with these conversations about right to die and end of life, discussion is lost and progress is not made,” Wells said. “There are many shades of gray. Some people refuse further therapy. Sometimes trying the last-ditch chemo can be the cause of death.”

Australian scientist David Goodall made headlines in May when he traveled to Switzerland to end his life at age 104. He had at least one failed attempt to end his life at his home before traveling to Switzerland.

“When people have a failed attempt they can acquire new disease and illness which increases their suffering,” Wells said. “People who attempt to overdose on Tylenol, for example, can have profound liver disease as a result.”

Navigating Family Influence

End-of-life care is an area of medicine where a patient’s family often has an influence on care. But since death with dignity legislation requires non-family witnesses, patients aren’t pressured into ending their lives prematurely.

The opposite scenario happens as well — one where family members resist the patient’s desire to die.

“I’ve literally had a spouse say to me, ‘He can’t die until this date because that’s when the next check comes in,’” hospice nurse Alison Keeler of Washington state said. “Family isn’t always on board with a death with dignity decision. I became a hospice nurse because so often we were doing interventions on people that I felt were really hastening their deaths. They weren’t comforted. They suffered.”

Kristin Metzger of Maryland, another hospice nurse, has taken care of patients who had family members waiting on an inheritance and patients who receive the gamut of care because a family is depending on a Social Security check.

“I’ve seen people intubated, tube-fed, because there is financial gain,” Metzger said. “They’re the reason hospitals have ethics committees.”

Metzger stressed that terminal patients, regardless of whether they are in a state where medical aid in dying is legal or not, should not have to worry about suffering or pain.

“Is physician-assisted dying the answer or the Band-Aid? I actually wonder if we put our work and energy into addressing the root cause — if hospice isn’t actually the answer.” Metzger said. “Many people live longer on hospice because we’re managing their quality of life… If people truly understood what hospice and palliative care can provide for the terminally ill, no one would ever consider medical aid in dying.”

While Metzger, Keeler and Wells hold different opinions on death with dignity legislation, all three agreed it is important for families to discuss their opinions and wishes openly long before a crisis occurs.

“In a perfect world: Everyone has the right discussion at the right time when they can make the right decisions, but unfortunately people are messy and complicated.” Wells said.

Complete Article HERE!

Providing comfort and a connection as the end draws near

In 2008, Sister Rose Mary Dougherty created a Companioning the Dying training program. She started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.

By Debra Bruno

In the United States, there’s probably no better way to spoil cocktail party chatter than by introducing the subject of death, dying or the end of life.

Yet, in the same way that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But also, many people have had the experience of sitting at the bedside of a dying person without the slightest clue what to do.

The growing interest in the topic is seen in death cafesdeath doulas, the “death positive” movement, hospice work and even the End-of-Life University . There are special decks of cards that allow families to work through end-of-life decisions.

And increasingly, classes, seminars, and programs are available that try to help people understand how to comfort those in the last stages of life.

Sister Rose Mary Dougherty, 79, a member of the religious order School Sisters of Notre Dame, calls this companioning the dying and she decided to make it a focus when, years ago, she found herself sitting at the bedside of a dying priest who was a friend. Next to her sat another friend, also a priest.

She watched as the two priests sometimes prayed and sometimes were quiet, together, doing nothing at all. At one point, the priest sitting next to her turned and said: “I don’t know what a priest should do anymore. I don’t know what I’m to do here, but I can be here. Maybe that’s my final vocation.”

That’s when it hit her: Even people trained in comforting feel a sense of helplessness when a friend or family member is dying. But she also resolved to do something about it.

So in 2008, Dougherty created a nine-month Companioning the Dyingtraining program, based in Baltimore. Today, the program provides instruction for hospice workers, caregivers, volunteers and family members on how be with someone in their final months or days.

Companioning the Dying concentrates on something that nearly everyone will have to face at some point in their lives. In the past, it was common for elderly family members to live with their adult children as they aged. Their last days were spent at home, surrounded by loved ones.

Society is different now, at least in many places in the ­industrialized West, where a youth-focused society has pushed end-of-life concerns mostly out of sight. As a result, people can feel unprepared — even panicked — when they have to deal with end-of-life issues.

“We’ve lost the place of dying,” says Jan Booth, a hospice nurse who also helps out with the Companioning the Dying program. “How do we bring aging and illness and dying into some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?”

Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.

Dougherty, now emeritus program director of Companioning the Dying, lives in her order’s residence in Baltimore. Her voice is weakened by Parkinson’s disease, yet her piercing blue eyes demonstrate the same alert presence that she teaches.

Companioning the Dying has something of the feel of group therapy — with readings, exercises and discussions — in which participants can talk freely and without judgment about anything they might have experienced with the dying, Peter Fitz, 75, says. He wanted to get involved in hospice volunteer work and did the program three years ago.

“Every death, and every person, is different,” says Fitz, a retired English professor. “The crucial part is to find out, with the individual not only on any given day or a particular hour or minute,” where they are. The task, then, is “emptying out your suggestions for people and learning to listen in a different way.”

Those “suggestions” can often end up being the worst thing people can do, says Sallie Tisdale, author of “Advice for Future Corpses (and Those Who Love Them).” People often say things such as “Are you sure the doctor knows what he’s doing?” and “God always has a plan,” she says. “Please don’t say those things.”

She suggests something similar to the Companioning program. “People ask me how to prepare. I say, stand at the doorway and take a self-inventory. Try to drop your own agenda. If the person says, I want to eat ice cream and watch a Yankees game,” just accept that, and do that for them she says.

Lourdes Salazar, a caretaker by profession who also volunteers for her church, St. Camillus in Silver Spring, says that one exercise her Companioning the Dying group did was to choose a day and behave as if it is your last day on Earth. She went out to lunch with her son and told him what she was doing. “I never realized how wonderful it would be to have a lunch with you on my last day,” she told him.

One of the main advantages of Companioning the Dying say participants, is the way it helps them all appreciate their own lives. “When you change your concept about the meaning of death, your life changes,” Salazar says.

Even a nurse who has spent most of her career working with terminally ill children and their families has found that the experience of the course helped her when she was faced with five nearly consecutive deaths in her own family. Janet Will says she thought she was experienced in handling difficult situations. But having the Companioning program allowed her to focus on her own grief and avoid the role of the professional.

“The people who love you the most don’t want to see you grieving any more,” Will says. “Where do you go with that?”

Xaverian Brother Michael McCarthy says that his group ended up being a “tremendously rich melting pot” of people from all walks of life. The group covered details such as what is involved in the dying process, but it also offered time to reflect on being compassionate with oneself even as you help someone else.

It’s not about taking a person’s blood pressure, he says. “You’re going to be present, and if you’re not present with yourself, then your presence isn’t going to be as meaningful” to the dying person.

Peter Fitz remembers visiting a man at a hospice in Baltimore. Fitz didn’t know him. The man was in a “highly agitated” state and couldn’t speak. Fritz asked him if he could nod his head. “Can I take your hand?” he asked. The man nodded yes. The two held hands until the man finally fell asleep.

“In a funny way, he gave me comfort, too,” Fitz says. “It’s an experience that in some important way we shared.”

Complete Article HERE!

Not a season to be jolly:

how to deal with dying during the holidays

By

Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling.

As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.

The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. Some may prefer to sit quietly and watch proceedings without necessarily being amongst the action, but still feeling like they are a part of things.

Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members may experience deep distress. You may feel the impending death, and your family the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.

Whether it’s you or a loved one facing dying at this time of year, there are some practical tips available that draw from a wealth of research and experience.

If you are the one dying

Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about the most comfortable arrangements for you. Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts.

The process of dying is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, Dr James Hallenbeck wrote:

For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.

We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually prefer to be alone. And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.

Studies indicate some dying people may feel they’re a burden to their family. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.

Many dying people feel they may be a burden to their families.

Have kind consideration for yourself. Remember you are a person before you’re a patient. And remember it’s OK to say “no” and forgo invitations.

If you’re caring for a loved one who is dying

Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is dying at home, they may require unrelenting attention.

Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.

Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and be guided by them. There is value in being present with the dying person without talking.

Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to tire, overwhelm or stress the dying person.

People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying.

Research shows children do manage themselves well in the face of dying, when adults support them to deal with their responses.

Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.

When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation.

It’s mostly important to remember not to hide your needs and feelings but to speak and communicate with your loved ones. Especially when dying may be imminent.

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