Month: December 2017

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Four Tasks Between Death and Burial

After death, there are four main tasks that need to happen before the burial. These can be achieved with the help of a funeral home or with the help of loved ones facilitating a home funeral. Learn what needs to take place between death and burial and the role of a funeral home versus a home funeral during the process.

When preparing for death, many people know that there are options for how a person is treated as they are dying. Documents may be completed, hopefully well in advance of the dying process, to express those personal wishes. Documents may include a Living Will, Health Care Power of Attorney, or 5-Wishes. Few know that there are options for after-death care. There are 3 options for the disposition of the body between death and interment or cremation:

Option 1: Hire a funeral home to carry out all aspects of after-death care, including transportation, refrigeration, initiation of death certificate, obituary, cremation and/or transportation to place of burial, and coordination of set up at cemetery for the graveside service.

Option 2: Hire a funeral home to carry out some of the above mentioned aspects of after-death care and take care of other details utilizing family and friends.

Option 3: Have family and friends direct the details of after-death care. This process is call a Home Funeral.

Four Main Tasks

Regardless of which option you choose for after-death care, four main tasks will need to take place between death and burial:

  1. Transportation From Place of Death: The body may need to be moved from the place of death (such as a hospital/nursing facility or home) to the place of after death care (either a home or a funeral home).
  2. Care of the Body: The body will need to be cared for until the time of burial. This care may include bathing, dressing, refrigeration or dry ice application, and perhaps wrapping in a shroud before cremation or burial.
  3. File Death Certificate: A death certificate will need to be filed. This includes gathering the information to complete the certificate, signature from attending physician, and filing with the county registrar.
  4. Transportation To Burial Site: The body will need to be transported from the place of care to Carolina Memorial Sanctuary when it’s time for the burial.

Between Death & Burial: Four Tasks

Before we go over the four steps that take place between death and burial, it’s important to understand the difference between a funeral home and a home funeral. If you’re not clear on the differences, read this page first.

The four tasks between death and burial are pretty detailed, so we’ve created the following graphic to help show your options. Scroll down to see a written explanation of the four main tasks.

Task 1: Transportation From Place of Death

Death can occur anywhere but will often occur at home, in a hospital, or in a hospice center. For unexpected deaths, the body is often brought to a hospital to be examined by the medical examiner. Depending on whether you’re opting for a home funeral or the assistance of a funeral home, the body will need to be transported to the place of care.

Funeral Home

If you hire the assistance of a funeral home, they will come to the place of death and pick up the body and take it to the funeral home for care.

Home Funeral

If you are having a home funeral, you can pick up the body from a hospital, hospice center or morgue and bring it home yourself. You also have the option of hiring a funeral home to pick up the body and transport it to the home for you. If you choose to pick up the body yourself, CEOLT is happy to act as a liaison to help that transition go smoothly.

Task 2: Care of the Body

Until the time of burial, the body will need to be cared for and kept cool. Again, this can be done at home or at a funeral home.

Funeral Home

Once a funeral home has picked up the body and brought it to their facility, they will then clean and dress and/or shroud the body. Afterward, the body will be placed in refrigeration to keep it cool until the day of burial, at which point the body will be transported to the burial site.

Home Funeral

For home funerals, once the body has been transported to the house, the body is first cleaned and then dressed and/or shrouded, and then placed in a room where the body can rest and where friends and family can visit if they choose. To keep the body cool, dry ice is usually employed. Certain traditions and spiritual faiths observe the practice of allowing the body to lie in state for multiple days. Using proper care, a body can be kept in the home for multiple days without issue until the time of burial. There are exceptions to this and having the support of an experienced person from CEOLT or going through the home funeral course will help to address the circumstances that could arise. Caroline Yongue, our Director, has been assisting families with home funerals for over 20 years, and has rarely encountered a situation where a home funeral wasn’t possible.

Task 3: File Death Certificate

While the body is being cared for and waiting for burial, a death certificate will need to be filed.

Funeral Home

If going the route of a funeral home, they will file the death certificate for you. You will need to provide personal information of the deceased.

Home Funeral

If doing a home funeral, an individual who is assisting will need to file the death certificate.  This includes gathering the personal information for the deceased, obtaining the signature and cause of death from the attending physician and filing the death certificate with the County Registrar (in the county where death happened).

Task 4: Transportation To Burial Site

The final task to carry out will be to transport the body to the burial site just prior to the time of burial. The date of burial will need to be coordinated with Carolina Memorial Sanctuary in advance so that we can prepare the grave and prepare for the service.

Funeral Home

On the date of the burial, the funeral home will transport the body to Carolina Memorial Sanctuary usually 30-60 minutes before the service is scheduled to begin. They will either release the body to Carolina Memorial Sanctuary or transport the body to the gravesite, depending on the circumstances.

Home Funeral

Just like with the first transportation, from the place of death to the place of care, getting the body from the home to the Carolina Memorial Sanctuary can be done by friends/family assisting with the home funeral or a funeral home can be hired for this service. Carolina Memorial Sanctuary will consult with you and recruit the help of volunteers if additional hands are needed to transport the body from the vehicle to the gravesite.

Final Thoughts: Saying Goodbye Before the Body Is Taken Away

We want to end by sharing some final thoughts on saying goodbye to your loved ones. Contrary to popular belief, the body does not have to be whisked away the moment death occurs. When death occurs at home, most people believe that they are obligated to immediately call 911 or a funeral home so they can quickly transport the body away. Or if a loved one has died at a hospital or hospice center, there may even be pressure from the staff to have the body removed. If you have decided to use a funeral home and the body will not be coming back home, you have the right to ask to spend time with the body of your loved one and say goodbye before the body is transported away from your home/the hospital/hospice center. The opportunity and time to say goodbye can be very healing and beneficial and help with closure and grieving. If a loved one dies at home, you can let the funeral home know that you would like some time with your loved one before they come to pick them up. It doesn’t even have to be the same day (this is known as a “delayed pickup”). If a loved one dies at a hospital or hospice center, let the staff know that you would like time with your loved one. They will often allow a number of hours for this to  take place. You even have the option of having the funeral home bring the body to the home for goodbyes, and then have them transport the body to the funeral home for care and refrigeration before burial. Last – you always have the option of going to the funeral home and having your goodbyes there. The time after death is the last time some people have to see their loved ones and say goodbye – so be sure to ask for what you want and what you need and know that you can take your time.

Complete Article ↪HERE↩!

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Can a dying patient be a healthy person?

By and

[T]he news was bad. Mimi, a woman in her early 80s, had been undergoing treatment for lymphoma. Her husband was being treated for bladder cancer. Recently, she developed chest pain, and a biopsy showed that she had developed a secondary tumor of the pleura, the space around one of her lungs. Her oncology team’s mission was to share this bad news.

Mimi’s case was far from unique. Each year in the U.S., over 1.6 million patients receive hospice care, a number that has been increasing rapidly over the past few years. What made Mimi’s case remarkable was not the grimness of her prognosis but her reaction to it.

When the members of the team walked into Mimi’s hospital room, she was lying in bed holding hands with her husband, who was perched beside her on his motorized wheelchair. The attending oncologist gulped, took a deep breath, and began to break the news as gently as he could. Expecting to meet a flood of tears, he finished by expressing how sorry he was.

To the team’s surprise, however, no tears flowed. Instead Mimi looked over at her husband with a broad smile and said, “Do you know what day this is?” Somewhat perplexed, the oncologist had to admit that he did not. “Today is very is special,” said Mimi, “because it was 60 years ago this very day that my Jim and I were married.”

The team members reacted to Mimi with astonishment. How could an elderly woman with an ailing husband who had just been told that she had a second, lethal cancer respond with a smile? Compounding the team’s amazement, she then went on to share how grateful she felt for the life she and her husband had shared.

Mimi thanked the attending oncologist and the members of the team for their care, remarking how difficult it must be to deliver bad news to very sick patients. Instead of feeling sorry for herself, Mimi was expressing sympathy for the people caring for her, exhibiting a remarkable generosity of spirit in the face of a grim disease.

The members of the team walked out of Mimi’s room shaking their heads in amazement. Once they reached the hallway, the attending physician turned and addressed the group: “Mimi isn’t the only person in that room with cancer, but she is surely the sickest. And yet,” he continued, to nods all around, “she is also the healthiest of any of us.”

“Be thine own palace, or the world’s thy jail.” – John Donne

Disease need not define us

Mimi’s reaction highlights a distinction between disease and illness, the importance of which is becoming increasingly apparent. Simply put, a body has a disease, but only a person can have an illness. Different people can respond very differently to the same diagnosis, and those differences sometimes correspond to demographic categories, such as male or female. Mimi is a beautiful example of the ability to respond with joy and gratitude in the face of even life’s seemingly darkest moments.

Consider another very different patient the cancer team met with shortly after Mimi. Ron, a man in his 40s who had been cured of lymphoma, arrived in the oncology clinic expecting the attending oncologist to sign a form stating that he could not work and therefore qualified for disability payments. So far as the attending knew, there was no reason Ron couldn’t hold a job.

Ron’s experience of disease was very different from Mimi’s, a phenomenon familiar to cancer physicians. Despite a dire prognosis, Mimi was full of gratitude. Ron, by contrast, though cured of his disease and apparently completely healthy, looked at his life with resentment, even anger. He felt deeply wronged by his bout with cancer and operated with a sense that others should do what they could to help make it up to him.

Mimi was dying but content with her life. Ron was healthy but filled with bitterness. Both patients had the same diagnosis – cancer – but the two human beings differed dramatically, and so too did their illness experiences. Mimi felt blessed by 60 years of a good marriage, while Ron saw in his cancer just one more example of how unfair life had been to him.

“Death be not proud, though some have called thee Mighty and dreadful, for thou art not so…” – John Donne

The real meaning of health

When the members of the cancer team agreed that Mimi was the healthiest person in the room, they were thinking of health in terms of wholeness or integrity. In fact, the word health shares the same source as the word whole, implying completeness or fullness. Ron felt repeatedly slighted, but Mimi looked at life from a perspective of abundance.

A full life is not necessarily marked by material wealth, power over others, or fame. Many people who live richly do so modestly and quietly, never amassing fortunes, commanding legions, or seeing their picture in the newspaper. What enriches their lives is not success in the conventional sense but the knowledge that they have done their best to remain focused on what really matters.

Mimi easily called to mind many moments when she and those she cared about shared their company and their love. Any sense of regret or sorrow over what might have been quickly gave way to a sense of gratitude for what really was, still is, and will be. Her outlook on life was shaped by a deep conviction that it had a meaning that would transcend her own death.

When someone has built up a life ledger full of meaningful experiences, the prospect of serious illness and death often do not seem so threatening. For Mimi, who had lived most of her days with a keen awareness that they would not go on forever, death’s meaning had been transformed from “Life is pointless” to “Make every day count.”

Mimi regarded the prospect of dying as a lens through which to view the meaning of life. She saw her illness as another adventure through which she and Jim would pass. Death would separate them, but it would also draw them closer together, enabling them to see more clearly than ever how much their love meant to them.

From Mimi’s point of view, death is not a contaminant, fatally introduced to life at its final stage. Instead death is a fire that burns away all that is not essential, purifying a person’s vision of what is most real and most worth caring about. Though not happy to be ill, Mimi was in a profound sense grateful for death. Her sentiments echo those of the poet John Donne:

“One short sleep past and we wake eternally: And death shall be no more; death, thou shalt die.”

Complete Article ↪HERE↩!

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Two state medical societies drop opposition to medical aid-in-dying

by Joanne Finnegan

[T]wo state medical societies have dropped their opposition to medical aid-in-dying, a position that mirrors growing acceptance of the practice among many doctors.

The Massachusetts Medical Society on Saturday became the 10th chapter of the American Medical Association to depart from the profession’s long-standing opposition to physician-assisted dying, according to an organization announcement.  

The Vermont Medical Society also recently joined the list of medical associations that have voted to take a neutral stance on physician-assisted death. Massachusetts and Vermont joined medical societies in California, Colorado, Maryland, Maine, Minnesota, Nevada, Oregon and the District of Columbia in dropping opposition to what was once called physician-assisted suicide. Supporters of legislation that allows doctors to write a prescription for a lethal dose of medication that terminally ill adults can use to end their lives now prefer the term medical aid-in-dying.

The shift in position is a new one, as nine of those medical societies adopted a neutral stance in the last two years, according to the group Compassion & Choices. The group praised the action by the Massachusetts physicians’ group, which it hopes will improve the chances for passing legislation in the Bay State to legalize aid-in-dying.

The society’s House of Delegates voted to adopt a position of “neutral engagement,” which it says will allow it to serve as a medical and scientific resource as part of legislative efforts that will support shared decision-making between terminally ill patients and their physicians. The change followed the release of a survey of the society’s members that showed they supported the aid-in-dying bill the state legislature is considering by a 2-1 margin, Compassion & Choices said.

Also applauding the decision was Roger Kligler, M.D., a retired doctor who has stage 4 metastatic prostate cancer and filed a lawsuit against the state seeking the right to die using self-administered medication. Compassion & Choices and a fellow physician, who wants the right to prescribe medications to help patients die without fear of prosecution, have joined in that lawsuit.

“I am excited about this decision because the legislature greatly respects the medical society’s positions on healthcare issues and its previous opposition to medical aid-in-dying was a serious roadblock to passing legislation authorizing this end-of-life care option. I’m extremely grateful for the society’s change of heart,” Kligler said in the group’s announcement.

The Massachusetts society’s vote came after considerable discussion, as aid-in-dying raises ethical questions for many physicians.

Six states, including California, Colorado, Montana, Oregon, Vermont and Washington, as well as the District of Columbia, have explicitly authorized medical aid-in-dying

In Vermont, the medical society’s action caught up with existing law. The society dropped its opposition to the state’s 2013 death with dignity law, adopting a resolution at its annual meeting that says doctors have a right to decide if they should assist their patients in ending their lives.

While some physician groups have changed their stance, others have held firm. The American College of Physicians published an updated position statement in September reaffirming its opposition to legalization of what it still calls physician-assisted suicide.

Complete Article ↪HERE↩!

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You CAN Take It with You When You Go

By Alison Morris

Let’s say you’re mortal. Now let’s say you’re a book lover. Where’s the intersection between these two things? You guessed it — bookcase coffins. Which (with apologies to you squeamish types) is the theme of today’s post.

In my travels around the web searching for apartment storage solutions, I stumbled upon (and — really — it felt like I’d actually stumbled when I came across these) two different bookcases that double as coffins. This way you can hide your coffin in plain sight if you want to own and take possession of a coffin before you die, which apparently an increasing number of people are choosing to do.

Let me pause for a brief confession here: when I first found these bookcase coffin images, I thought this was going to be a funny post — a “what an odd and offbeat idea, let’s all laugh about it” post. BUT then I read the content of the webpages on which these coffins appeared, and the topic suddenly became both a lot less humorous AND a lot more interesting.

The first two bookcase coffins below come from the website of a Maine group called Last Things: Alternatives at the End of Life. The group and website were created by  Klara Tammany, whose moving essay about her own mother’s burial illustrates the reasons her family and others are choosing to have green burials and rejecting what she sees as impersonal and ecologically damaging funeral and burial practices. Last Things offers support and resources for those looking for more information about alternative burial options. The coffins displayed on their site (including this one) are all handmade by group member/woodworker Chuck Lakin. The first one here is the Bookcase Coffin model.

This second model is what Chuck calls a Multipurpose Coffin. It can be used either as a bookcase OR as an entertainment center, and I personally think it’s 100% convincing as either of those things. (I mean, really — who would know?)

Like Chuck Lakin, New Zealand company Final Furniture Limited is creating coffins mindful of eco-conscious clients. Their nextgen bookshelf/wine rack allows you to raise a glass to your past while, well, facing your future. The photo on the beach at the top of this post shows how the bookcase/winerack looks in its… alternate form. (I feel like I’m writing about a Transformer here.)

While the Last Things and Final Furniture bookcase coffins are probably intended more for people nearing the end of their lives, this next one (via Inhabit), which designer William Warren calls Shelves for Life, is not. As Warren explains, “Shelves For Life is a self-initiated project to further explore ideas of built-in sentimentality within our possessions. The aim is to make stronger emotional relationships with our belongings and encourage lifelong use… They are intended to be used throughout life as storage for personal belongings. On death, the shelves are dismantled and rebuilt as a coffin.”

Maybe I’m being swayed by the fact that we’re about to spend some money on a “real” sofa which feels like an almost-lifelong commitment, but I like the rather anti-IKEA aim of Warren’s experiment with this. (Note, though, that someone has apparently come up with plans to make an IKEA bookcase coffin too.) Disposable is bad. You can store things in it now AND be buried in it later is, um… Good. Mostly. Especially when the design is as elegant as this.

That having been said (and this is the problem), I’m not sure how it would feel to be shelving books in and dusting knick-knacks on my future coffin. Suddenly that bookcase would feel a bit TOO important to me, I think. (God forbid the movers drop THAT one!) And I’m not sure I’d want such a large, visual reminder of my own mortality in my living room. Unless its presence would encourage me to procrastinate less and work more… Hmmm.

In looking around for more info on this topic I came across a thoughtful post on a blog called Pink Slip by one Maureen Rogers, that concludes thusly: “I have just gauged that our old Workbench bookcases are neither deep enough nor sturdy enough to act as coffins. If, when the time comes when Jim and I experience the miracle of death, we’re planning on anything other than cremation and scatter, I would consider one of [Chuck Lakin’s] creations. I’d probably go for the coffee table version. We can always use more storage.”

And, Maureen, you’d always have it too.

Complete Article ↪HERE↩!

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Straight From The Patient’s Mouth

Videos Can Clearly State Your End-Of-Life Wishes

By Judith Graham

[F]or years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

“I was like ‘Oh my God, it’s like someone was reading my diary — this is exactly what I want,’” she recalled.

Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option.

One organization doing pioneering work in this field is the Institute on HealthCare Directives, founded by Dr. Ferdinando Mirarchi, the Pennsylvania physician whose work Forman heard about. Others include MyDirectives, a Texas company that helps people create digital advance directives, including personal video and audio statements; Life Messages Media of Wisconsin, which also creates video memoirs and ethical wills, a way to share your values with your family; and In My Own Words, launched by a geriatric psychologist in California.

These organizations hope the videos will help physicians and families interpret and follow written advance directives. About one-third of adults have such end-of-life documents.

“It can give everyone confidence that Mom was competent and knew what she was signing and that no one tricked her by sticking a document in front of her and asking her to sign,” said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring,” said Dr. Monica Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital System in Alabama.

Formats vary. The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.

Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth. The cost: a one-time fee of $350, which covers 10 years of follow-up consultations and maintenance, or a setup fee of $50 to $100 accompanied by an annual fee of $35 to $50.

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

Easy accessibility to the videos is essential but may not be practical, yet. The institute houses videos on a server; they can be called up on digital devices via QR codes, or hyperlinked bar codes, that are printed on cards given to clients. (Forman carries hers in her wallet, next to her insurance card.) Passwords are discouraged because these might be a barrier in an emergency. Still, medical personnel aren’t accustomed to searching for cards of this sort.

Videos by MyDirectives clients also tend to be short — between 15 seconds and a minute. The service is free to consumers; the company’s business model relies on partnerships with health care organizations. “The consumer deserves to have their voice heard in electronic health records” that these organizations maintain, said Jeff Zucker, MyDirectives chief executive officer, who hopes that health systems will eventually embed patient videos in those records.

What weight video testimonials will carry in legal conflicts has yet to be determined. Only Maryland allows advance directives to be conveyed in a video format, while New Jersey explicitly recognizes video or audiotapes as supplements to written documents, according to the American Bar Association’s Commission on Law and Aging.

Multimedia advance directives likely will be taken into account in end-of-life disputes, just as a daughter’s statement that “Mom told me this is what she wanted last week” is given consideration, Pope said.

“Since the only thing that constitutes clear and convincing evidence under the law is the written advanced directive, make sure your video is consistent with what’s expressed in these documents,” he advised.

Physicians seem receptive to the videos. According to a study published this year, doctors were more likely to agree about recommended treatments for patients in difficult circumstances after viewing patient videos, as well as evaluating written advance directives.

“Doctors always question whether we’re doing the right thing when it’s just the paper document,” Mirarchi explained. “When you can see a patient expressing what their true intended wishes are, in their own voice, looking into a camera, that’s a very powerful tool.”

For their part, patients seem comfortable speaking before a camera, according to unpublished research conducted by Dr. Angelo Volandes, an internal medicine doctor at Massachusetts General Hospital and a pioneer in creating videos that help patients understand the pros and cons of end-of-life interventions.

Complete Article ↪HERE↩!

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Is there ever a ‘good death’?

As a doctor, Diana Anderson has often used the phrase, but rethinks it after losing a loved one

By Diana Anderson

“It was a good death,” the doctor said after one of our patients passed away while I was a resident physician on the night shift. The same line, I remembered, ends one of my favourite movies, Legends of the Fall, when Brad Pitt’s character dies at an old age from a bear attack.

My role throughout the night had been to adjust the medication. I would frequently check on my patient’s vital signs and update his family huddled at the bedside of the elderly man.

“How long will it be, Doctor?” they would ask each time I approached.

But I could not say for certain. “Most likely a few more hours, or less,” I would reply, based on the vital signs, the medications but mostly on a clinical gestalt I was learning.

As a physician-in-training, I would go on to use the “good death” expression. At that time, it carried a meaning of death free from lines and tubes, medications administered for comfort and family at the bedside. But I question this expression now, after the death of Baba, my grandmother.

Baba lived alone in her house, feeding her backyard birds and squirrels religiously, and reading The Economist and National Geographic regularly.

My sister and I were lucky to have a grandmother by our side as children and even luckier to have her with us so far into our adult years as a guide and confidante. Baba and I kept in touch with frequent calls and weekly letters by mail. Through writing, she and I shared a unique bond. In the last letter I wrote her, I told her how much her life had impacted and touched us. For me, that meant inspiring a role working with older people.

Shortly after her 97th birthday, Baba fell and was no longer able to live on her own. I moved into her small house for two weeks as we secured a bed at a nearby nursing home. Even after working as a physician for days at a time without sleep, nothing could compare to the exhaustion I felt as a full-time caregiver.

Each time I changed her diapers, Baba became tearful, saying she felt humiliated and was a burden. Nevertheless, she found a way to laugh, recalling that she had changed my diapers as an infant and now “I am the baby who needs changing.” We chuckled over that each evening.

In the nursing home, her frailty seemed to increase rapidly. She was sad and cried often. Living in one room was “not really life,” she said to me a few days before she died.

She was suffering, but the best medicines seemed to be not what physicians could prescribe. It was the family visits, access to sunshine, nature views and the pet-therapy sessions – those brought smiles and a certain calmness that no pharmaceutical therapy ever could. The day before she died, she told me to “live life to the fullest, even if that means experiencing pain and heartache in addition to the joy and happiness.”

Baba wished often to simply fall asleep and not wake up and had concerns over how she would die. “I am ready to go,” she would say to me, “I have no more purpose.” I would tell her she was greatly needed, as the anchor to our little family – our supply of strength and endurance. She served as the one to go to for a listening ear and for her life wisdom. We were not ready to let her go.

One day, I got the call.

“You should come now. We think she is dying.” How many times have I made that same call to families, to tell them to come in but to drive carefully?

We did not drive carefully or slowly that night. A second call minutes later stated that, after some oxygen, she had regained her mental status and was speaking again, so perhaps I did not need to come back. The gas pedal was pressed even harder, the doctor in me knew too much to be comforted by those words.

Baba died 18 hours later.

Although she was still lucid when I arrived, she was in pain and visibly distressed. When I took her hand, she knew my name, but asked if she must be dreaming. “No, it’s not a dream, Baba, I am here.”

Overnight, there were limited orders for palliative medications. As a physician, I felt powerless and assumed my role as granddaughter. By morning I called my family and said they should come.

The day-shift palliative nurse immediately assessed the situation and ordered medications. She then asked me when to administer them. I knew that once we began, Baba would be with us less and less. My parents, sister and our dog, Bilirubin, assembled around her bed. Baba’s eyes lit up to the sensation of Bili’s furry coat on her hand. She knew our names. “Go ahead,” I said to the nurse.

Over the next few hours, Baba’s breathing slowed considerably. Dying takes time. Each time I thought her last breath came, she would then take another. When no breaths came for many minutes, I put my head on her chest and felt nothing – no heartbeat, no breath and no life.

After her death, I cried often for many days.

As a physician, I would call what Baba went through a “good death.” She passed away almost as she had wished, as if she had simply fallen asleep. She did not experience a massive heart attack or stroke, she did not endure trauma and she was not bedridden with painful lines and tubes. She had her whole family around, her hands were held and she was told she was loved. How could this be anything but a good death?

But as a family member, I wouldn’t call this a good death. It was simply a difficult death. There really is no other kind of death when you lose someone so close. Perhaps the last line in the movie should not have been that it was a good death, but rather, “It was a good life.”

Complete Article ↪HERE↩!

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The Role of the Oncology Nurse in an Effective Palliative Care Family Meeting

By

[O]ncology nurses are in the perfect position to implement ideal care for their patients via the use of the family meeting in palliative and end-of-life care. This type of meeting provides an opportunity to coordinate the responsibilities of caregivers and clinicians with patient needs, according to a study by Myra Glajchen, DSW, director of medical education, MJHS Institute for Innovation in Palliative Care, New York, and Anna Goehring, MD, palliative care physician, MJHS Hospice and Palliative Care, New York.1

Oncology nurses usually spend more time with patients than other staff and are able to answer patients’ questions about their medical conditions and discuss end-of-life issues with patients when they are ready to do so. They are also in a good position to evaluate caregivers’ condition and determine how involved caregivers want to be in helping patients make crucial decisions. These decisions are often difficult, yet Ms Glajchen and Dr Goehring write that end-of-life communication skills are not emphasized in the nursing literature.1 They note that the role of the oncology nurse in family meetings is not clear and that there has been little guidance on evaluating and managing caregiver distress.

Family caregivers have their own obligations but often bear heavy, difficult caregiving responsibilities in addition to handling their own personal concerns. Nurses can evaluate the extent to which their caregiving burdens go beyond their skills to cope and provide what their ill family member needs. Oncology nurses also are responsible for assessing the strength of the relationship between patients and their caregivers. A satisfying relationship correlates with a better commitment on the part of the caregiver, although this must be balanced with other activities to avoid caregiving becoming fraught and burdensome.

There must also be a balance with other family members; the researchers stress that a diagnosis of cancer for one family member affects the entire family. Caregivers for patients who are being actively treated for disease are in better physical and emotional health than caregivers for patients receiving palliative and end-of-life care. Oncology nurses should use family meetings to evaluate and structure caregiving situations for patients, caregivers, and their families.

The Meeting

There are a number of reasons for healthcare teams to request a family meeting. Often such meetings are about a decline in a patient’s medical condition or another change in the patient’s prognosis that requires making decisions about new treatments and different options for advance care planning. Meetings may also be called for specific purposes such as completing living wills, do not resuscitate (DNR) and do not intubate (DNI) orders, or to discuss mechanical ventilation, artificial hydration, and nutrition. The nurse’s role is key in these decisions. Oncology nurses are qualified to understand medical information, which they can easily interpret for patients and their families at these meetings. For this reason, it is important for oncology nurses to obtain and review all updated information from the patients’ clinicians prior to the meeting.

With the oncology nurse at the meeting, other clinicians only need to attend if doing serves a specific purpose.1 However, the participation of involved staff from other disciplines concerned with the patient’s care is helpful. Caregivers the healthcare team or patient wants to invite should attend the meeting, although the researchers caution there should be more caregivers than staff present so as not to overwhelm the family at this difficult time. The care team leader should explain why the meeting was called, provide a clear agenda, and should request all attendees to mute their cell phones and pagers during the meeting. A member of the healthcare team should take notes; the investigators suggested using the Family Meeting Report (Figure 1) and documenting the meeting in the electronic medical record.1

A family meeting takes time; at least an hour for preparation, an hour for the actual meeting, and half an hour to an hour for follow-up is required.1 Despite the work-intensive nature of a palliative care family meeting, the oncology nurse can be a true asset, lowering stress and offering information, realistic hope, supportive care, and comfort to patients, caregivers, and other family members.

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