A Better Way for Families to Care for Dying People

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Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care

Although 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.

The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.

To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.

Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.

How can palliative care and hospice improve the quality of life for the terminally ill and their families?

Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.

Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.

How can family members help a terminally ill person continue to live a full life with a chronic illness?

People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.

Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.

Can pain be controlled when you have a terminal illness?

Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.

How can caregivers and family members combat “compassion fatigue?”

Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.

Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.

Complete Article HERE!

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How to comfort dying and bereaved people? ‘Be there.’

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Often we struggle with finding the “right” words to comfort someone who is dying or who has lost a loved one but experts say all you really need to say is, “I’m sorry,” that being there for the individual already speaks volumes.

By Donna Vickroy

She seemed asleep in the quiet, softly lit room in the hospice section of Advocate Christ Medical Center in Oak Lawn.

Her face was soft, relaxed, almost peaceful. Her breathing was steady. I didn’t know if she could hear me, but I struggled with what to say anyway.

The visit with my mother’s best friend, who lie dying, immediately took me back to the days before my mother’s death five years earlier, when the “right” words just wouldn’t seem to come, even though I had so many hours to formulate them.

Of all the phrases in the universe, the ones that we need in times of grief are often the most elusive.

What do you say to someone who is dying?

And what do you say afterward to those devastated by a loss?

How to navigate grief, whether it’s our own or that of someone close to us, seems a great mystery even to people whose college major was communication.

So this column will attempt to shed some light, to offer some advice and to serve as a virtual hug to those in need.

Because at some point in our lives all of us will be there, facing death, whether its our own or that of someone we love.

Joseph Masbaum has been bereavement coordinator for Advocate Hospice South for 13 years. He has comforted thousands of people as they were dying or through the grief process.

A person’s final moments, he said, are a good time to review. “Encourage them to feel good about their life.”

Regardless of how rich or exciting a person’s life may have been, Masbaum said, “When someone is dying, what’s most important to them is relationships. So talk about the people in their lives. Remind them that their family loves them. Just be reaffirming.”

It’s also important to not fear silence, he said.

While many people on their deathbed desperately want to be comforted by loved ones, some “don’t want to talk about it, some are bitter, some are in denial, some are avoiding it,” he said. Often, it can be hard to know what to say.

In those cases, he said, “I ask them what the doctor has told them about their situation. It gives you a start to know where they are.

“Ask them if they’re comfortable talking about themselves, about their life, their family,” he added.

“Some people avoid the dying because they’re afraid and don’t know what to say. So many of us are uncomfortable with silence — we fill it up with words,” he said. But when you know somebody is dying and are at a loss for words, he added, “Just be silent or say, ‘I don’t know what to say but I’m here because I care.'”

Steve Hoerger, pastor of Salem United Church of Christ in Oak Lawn, is a hospice chaplain. He said finding the right words can sometimes be tough “even for me who deals with terminal people daily.

“I think you let them take the lead and then be comfortable with wherever they go so they know they can open up,” he said.

“I rarely ask direct questions about how they’re handling the dying process. I ask questions about their life and then about their diagnosis and how it’s affecting them. This gives them the opportunity to say more about what they’re struggling with, or not. I’m comfortable with either,” Hoerger said.

Sometimes, he said, conversation can be shocking, but he remains nonjudgmental.

After the loss

Masbaum said, following the death of a loved one, it is common and normal to feel a multitude of emotions: shock, numbness, guilt, regret, sadness, anger.

It is most important, he added, to understand “there is nothing wrong with you” for feeling these emotions.

“So be careful to be very kind to yourself and avoid any negative self-talk,” he said.

Instead, “tell yourself, ‘I am doing the best I can. There’s nothing wrong with me, It’s the grief,'” he said.

Masbaum said when he calls to check on people following the death of a loved one, “They often tell me they feel lost, they feel empty, because their whole life has changed, especially if that person was one of their go-to people — someone they lived with, loved, saw everyday.”

Masbaum recalled a 12-year-old girl who was devastated by the loss of her grandfather because he was someone who really listened to her, someone who had been a key person in her life.

He recalled phoning one woman whose mother had died. “It was 1 in the afternoon or so. She said, ‘I’m in this chair all morning. Right now, I’m still in this chair. I just have no energy.’ So I normalized her feelings. I told her it’s normal to have fatigue and no energy,” he said.

“I only talked to her for about a minute but two hours later I was thinking of her and I called her back. This time, she was excited. She said, ‘I just came in from the yard. I was working in the garden for an hour.’ Prior to that, she was sitting in the chair, admonishing herself for being lazy. But when I told her that was the grief, and that it is normal, it really helped her,” he said.

Masbaum said he encourages people to talk about their loved ones, their feelings and about themselves.

“A lot of times we want people to be fixed — we think they should be getting over their sorrow — but (humans) need to process feelings,” he said. “Each person is unique in their grief and in how long it will take to adjust. Grief is a process that cannot be rushed. There is great wisdom in focusing and coping one day at a time as best you can.”

He also encourages those who are grieving to spend time with people who understand their grief, such as a support group or counselor or another person who also has experienced loss.

“Journaling your feelings is most helpful for many. Some bereaved who journal find it comforting to write a letter to their loved one each evening,” Masbaum said.

He also encourages people to talk with their deceased loved one.

“Some people may say ‘you’re crazy’ for doing that but for 13 years, of the thousands of people I’ve talked to, I’ve only met about four people who never talk to their deceased loved one,” he said. Just saying, “I love you, Mom, I miss you” can be cathartic, he said.

“There’s a gentleman I met in Oak lawn. He told me a story about missing his wife. In the end when he got up to go, I asked him if he ever talked to his wife. He stumbled and said, ‘Maybe a little, I just don’t know how I feel about that.’ I told him what I tell almost all the people I counsel, that it’s an individual thing but that it’s very common, very normal,” Masbaum recalled.

“The next week he came in, I asked how he was doing. He said, ‘I’m doing much better since you told me I can talk to my wife. I talk to her in the garden where we used to work together,'” he said.

Many people, Masbaum said, keep “transitional objects” such as jewelry or items that belonged to a loved one. Many wear a piece of their loved one’s clothing, such as their sweatshirt or jacket, to help them feel a connection.

Also, he said, maintaining a daily routine with some movement or exercise is especially important for those who are grieving, even if it is just a daily walk around the block.

The rituals of death

Peggy Schaffer and Brian Fitzpatrick, funeral directors at Brady-Gill Funeral Home and Cremation Services in Tinley Park, have had funeral attendees reveal that they don’t know what to say at a visitation or interment, particularly if the deceased was taken tragically or is a child.

“The best thing to say is, ‘I’m sorry’,” Schaffer said. “Don’t say, ‘It’s good you have other children’ or ‘You’re young enough to have more.'”

If words escape you, she said, remember actions often speak louder.

“It means more to someone (who is grieving) that you walked in, acknowledging that their mother, father, brother, sister, child lived and touched their lives. You don’t have to say anything,” Schaffer said. “The fact that you took time out of your day to be there says it all.”

Sometimes, she added, a meal a week or so after the funeral reminds the loved one that they haven’t been forgotten.

“Pick up the phone and share a memory,” she said. “It doesn’t have to be a long conversation.”

When it comes to attending wakes and funerals, Fitzpatrick said, there are no “rules” about how long to stay or what to bring.

People still send flowers, Schaffer added, but over the last 25 years, services have become shorter, more streamlined, often with both visitation and funeral service on the same day, and the “gift” of Catholic Mass cards, signifying a future Mass will be said on behalf of the deceased, has dropped off considerably.

“We’re seeing a lot more cremation, with a memorial that includes the urn and lots of pictures,” she said. “More people see the urn as not as traumatic as the (deceased’s) body.”

Picture boards and videos can be conversation starters for those who struggle with what to say, she said.

Schaffer suggested letting a sympathy card or a message left on the deceased’s page on the funeral home’s website do the talking if you cannot.

“Don’t fumble over words,” she said. “If you can’t think of what to say, a hug or a touch will do.”

Finding my words

Standing at the bedside of my mother’s best friend, I decided to say what I would want to hear if the tables were turned.

I told her that we loved her. I thanked her for being a good person in our lives, for being helpful and kind and funny and constant. I thanked her for all of the rides she’d given me to work and school when I was a kid. I thanked her for letting my siblings and me have sleepovers at her house and for coming to my college graduation and for all the times she made us laugh and all the times she brought the best kolachkes in the world to my family parties.

I thanked her for believing in my dreams as a child and for being the biggest fan of my column when I became an adult, even if she did joke that it was only “to keep her nose in all of my business.”

I hugged her, kissed her forehead, rubbed her arm, held her hand and then I thanked her for being a good friend to my mother because that made her a good friend to us.

Although she moved her mouth and raised her eyebrows several times, I’m not sure if she heard or understood. Because I will never know that she didn’t, I am choosing to believe that she did.

Complete Article HERE!

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Researchers explore how people with Alzheimer’s disease use end-of-life medical services

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Because people are now living longer and often healthier lives, the rate of some illnesses that are more likely to develop with age has risen. These illnesses include dementia. In fact, the number of us living with dementia was already 47 million worldwide in 2015. It could reach 131 million by 2050.

Dementia is a general term that includes different types of mental decline. The most common type of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases.

As Alzheimer’s disease worsens, older adults may become more likely to have trouble performing daily activities, can develop trouble swallowing, and may become less active. This increases the risk for other concerns like infections. These infections, such as pneumonia, can increase the risk for death. As a result, the cause of death for people living with Alzheimer’s disease is often infections or some other cause, rather than the Alzheimer’s disease itself.

A team of researchers from Belgium recently studied how people with Alzheimer’s disease use medical services during their final months. The goal was to learn more about the best ways to help older adults with dementia at the end of their lives. Their study was published in the Journal of the American Geriatrics Society.

The researchers studied information from people with Alzheimer’s disease living in Belgium who died during 2012. They compared two groups of people who were diagnosed with Alzheimer’s disease.

One group had death certificates that listed Alzheimer’s disease as the cause of death. This was the group who died because of Alzheimer’s disease.

The second group included individuals diagnosed with Alzheimer’s disease but with death certificates that listed another cause of death (like infections). This was the group who died with Alzheimer’s disease (but not of Alzheimer’s disease).

The researchers looked at the healthcare resources the two groups used in the last six months of life.

Of the more than 11,000 people in the study, 77 percent had something other than Alzheimer’s disease listed as the cause of death on their death certificate while 22 percent died of Alzheimer’s disease. The average age of these individuals was 85, and most were women.

People who died with Alzheimer’s disease were more likely to have at least one hospital admission and more intensive care unit (ICU) stays. People in both groups had about 12 visits with a doctor during the last six months of their lives.

However, the people who died with Alzheimer’s disease received fewer palliative care services. Palliative care helps keep us comfortable when we are near death or dealing with a serious illness. This included fewer palliative home care services during the last six months of their lives. They also spent fewer days in a nursing home.

People in the study whose cause of death was listed as something other than Alzheimer’s disease were also more likely to have invasive procedures compared to people who died of Alzheimer’s disease. These invasive procedures included being put on breathing machines and being resuscitated (the medical term for reviving someone from unconsciousness or apparent death).

The researchers concluded that older adults whose cause of death was Alzheimer’s disease used fewer healthcare resources than people whose cause of death was listed as something else even though they had been diagnosed with Alzheimer’s disease. The researchers suggested that recognizing late-stage Alzheimer’s disease as an end-of-life condition could influence healthcare providers to use more palliative care resources and fewer invasive procedures.

Complete Article HERE!

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Black people must command end-of-life care

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By Brandi Alexander

As we celebrate Black History Month, one of our goals should be to change the history of African-Americans like my father enduring needless suffering when we die because we don’t prepare for the inevitable end of life.

When my father’s cancer came out of remission in 2010, he declined in a matter of months. I had never had one conversation with him about his end-of-life care goals, preferences and values, so he suffered terribly during his last days. My family spent so much time fighting over what we thought he wanted, when in reality, none of us knew what he really wanted. That experience taught me not only the importance of these discussions, but also how much of a need there is for us to start planning early, before a time of crisis.

Unfortunately, African-Americans are less likely to complete advance directives or have conversations with our families and health care providers about our their end-of-life care goals, preference and values, according to a 2014 report in the American Journal of Preventive Medicine. It is critical that our community begin focusing on advance care planning about the end-of-life care options, including educating ourselves about the value of hospice and palliative care.

The sad truth is that we suffer from higher rates of health care outcome disparities caused by smoking, obesity, hypertension, heart disease and cancer. By not having frequent conversations about end-of-life care options early, to prepare before a health emergency occurs, people of color often opt for aggressive, futile medical treatments that only prolong an agonizing dying process. African Americans are less likely to access comfort care, hospice and palliative care to maximize the quality of remaining life.

In fact, while representing more than 13 percent of our nation’s population, according to U.S. Census data, we account for only 8 percent of hospice users.

Unlike many of the other disparities that impact the community, this is one we actually have some control over. It starts with having a conversation. Unfortunately too many of us are not having discussions. In fact, 20 percent of African-Americans have not talked to anyone about end-of-life care, according to research conducted by the Duke Divinity School and the National Hospice and Palliative Care Organization.

Every individual has a responsibility to lead by example on health care issues, so I challenge you to start having conversations today, with your personal networks and your health care professionals. Complete an advanced directive and identify your power of attorney, the person who will make decisions for you in the case that you can not speak for yourself. The most loving thing you can do is to make your wishes known to your loved ones, it provides peace for all involved.

Tomorrow is not promised, so whether you want every treatment option available or none at all, it’s imperative to make sure it is clear to those who matter to you the most. Start this process by visiting Compassion & Choices website page, compassionandchoices.org/plan-your-care, where one can access state-specific advance directives and find other resources and tools to help, free of charge.

We even offer a diagnosis decoder that generates questions for physicians specific to a particular illness. Educating and utilizing these resources will not only empower you, it will also have a positive and lasting impact on our community as a whole and the way we experience end of life. Remember … talking about death will not kill you … advocate for yourself!

Complete Article HERE!

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What should I know about dying with cancer?

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From what to ask your doctor to the key considerations around dying at home, award-winning oncologist and author Dr Ranjana Srivastava offers her advice for patients, friends and family on navigating the last days of cancer

For all the world’s teachings on death and dying, the patient who doesn’t lament it for one reason or another is rare. Some people are unprepared to die. Others are worried about those left behind. Some are angry. Many are frightened. Not everyone is hungry for more life, but almost everyone at some point feels apprehensive about letting go. If you or someone you love is struggling with these issues, here are some tips to navigate the future.

Talk to your oncologist
Studies show that, when it comes to prognosis, oncologists and patients often have different interpretations of the information shared. One found that, while oncologists said they had discussed a poor prognosis, many patients felt that they’d not been made aware of it.

Your oncologist should be clear on your prognosis and what that means, but never be afraid to push for more information – it is both appropriate and valuable to ask your oncologist about what to expect. A lack of awareness or understanding of your prognosis could have major implications for acceptance and planning for the end of life.

In terms of details, dividing life expectancy into broad groups of days, weeks, months or years seems helpful for many people. Asking your doctor to describe what decline may look like can also be helpful, as can ­­getting an understanding of how people die from cancer, medically speaking – a question I’ve tackled here. If you are not sure how or what to ask, get help from your family doctor or palliative care nurse, who can help you write out some questions to take to your next appointment.

Talk to each other
While it can be heart-wrenchingly difficult to talk about the finality of dying, patients and relatives say that even one discussion around an incurable situation can be helpful. Acknowledging mortality allows doctors and families to ask the patient, directly, what they want. This kind of honesty can infuse purpose to a time of challenge by allowing the patient to openly express love, regret and desires, and the family to fulfil the patient’s wishes – whether it’s for their final days or after death.

Martin Ledwick, head information nurse at Cancer Research UK, adds that friends and relatives should leave space for their loved one to express what they need at this time:

“Take their lead about how they want you to support and care for them,” he says. “Sometimes they may want the opportunity to talk about deeper feelings, but at other times they may want to feel ‘normal’ and do some of the things they would normally do in your company. It is good to have the opportunity to be able to tell each other how you are feeling and express love, but sometimes it’s useful to be distracted from this.”

Live well before you die well
Being adequately informed about prognosis allows you control over your life. A patient who has had multiple lines of chemotherapy may be offered yet another treatment, but if they have a realistic understanding of its effectiveness, they may choose to stop treatment and focus on “quality of life” – enjoying cherished experiences: spending time with family, enjoying favourite foods or sitting in a favourite environment. Patients who accept the inevitability of death can make every day count, ultimately improving their own experience and leaving their loved ones in a better place.

Of course, as well as fulfilling any desires, many patients and their families feel grateful for some warning – allowing them to arrange finances, child provisions or decide to, for instance, move a wedding, take a holiday, or downsize a house. Key things to consider are your will, which should be written or updated as soon as possible, your finances (including any benefits you or your carers could be eligible for) and your funeral – which you may want to have input into.

Considering where to die
Most patients hope to die at home, but the truth is that with an ageing population, far-flung relatives and busy households unequipped to manage the round-the-clock needs of a dying patient, it may not be possible. Where it exists, inpatient hospice can be a relief. With a more peaceful environment and interventions aimed at comfort care, it can allow loved ones to focus on providing emotional support, with counsellors and social workers also on hand.

Going home works if there is strong community support and at least a few committed people in place. Caregiving is physically and financially demanding, and can be lonely. Many caregivers are surprised to find that visiting services only come by for short stints; the rest of the time they are on their own. Nonetheless, people experience pride and satisfaction in having nursed a loved one in familiar surroundings – there is something deeply meaningful about this kind of service. Wherever someone dies, it is important to avoid guilt and accept that there are many ways of cherishing a loved one.

If you are considering dying at home – or caring for a friend or family member – seek sound advice about the logistics of end-of-life care in a variety of settings; palliative care teams, occupational therapists, physiotherapists and social workers are expert advisers on feasibility.

“Find out what care is available for you by asking your hospital specialist or GP,” says Ledwick. “And make sure they’ve referred you to the community palliative care team, or one linked to your local hospice. Ask them if any equipment can be provided – such as special pressure-relieving mattresses or beds, or a commode if it’s difficult for you to get to the bathroom – and you might want to consider bringing a bed downstairs.”

If you think the situation is tenable, the next thing to do is finalise your support system. “If you can,” Ledwick says, “organise your friends and relatives in advance, perhaps working out a rota of who is available to give help when. And finally, talk to your local hospice to see if a temporary stay from time to time (respite care), to give your carers a break, is an option.”

You’ll also all need to be armed for the final days – managing physical changes, new symptoms and changes to eating and drinking, which your palliative team should help you understand.

Grieve in your own way
On a recent visit, an elderly patient described the aftermath of his wife’s death. “It’s like there is a ‘use by’ date to my grief. One month was OK, two months was getting long. By six months, my children wanted me on antidepressants. They couldn’t understand that after 50 years together, I feel like I have lost a part of my body. The sensation hits me suddenly and I become sad. But I don’t mind it – the sadness feels right.”

This man was not depressed. In fact, he was doing a remarkable job of coping. It’s the modern world that has lost patience with grief. Grief makes people uncomfortable; it prompts self-examination. But there is no one way to grieve, neither is there a time limit. Grief can come in waves and pounce on you at any time or occasion. Give yourself permission to be sad.

Ledwick agrees: “Relatives and friends need to be patient with grief and allow people to do it in their own way. It is natural for loved ones to want to make things OK – they can feel helpless – but it is important not to underestimate the power of listening to someone and to resist the urge to change the subject or try to cheer them up. This makes people feel like no one is listening to them or understanding how hard it is.”

Friends and relatives can be very helpful in recalling a deceased relative with affection, but if the sadness impacts your life and your ability to carry out day-to-day activities, it’s important to get professional help. “If depression persists or becomes a long-term problem, then grief counselling can be helpful,” Ledwick advises. “The local hospice, your GP or the hospital may be able to put you in touch with grief counselling services or contact organisations like Cruse bereavement care.”

It’s important to have someone to talk to, and speaking to a professional to understand your emotions and coping skills can be extremely useful in providing a template for the rest of your life.

Complete Article HERE!

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Saving the Earth By Dying

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The environmental toll of conventional burials is stark, with a typical 10-acre cemetery containing enough coffin wood to build more than 40 houses and enough embalming fluid to fill a swimming pool.

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The deathcare industry is changing, and with it are the ways we dispose of our bodies.

Situated just south of San Francisco, the small town of Colma, Calif., has become famous, or perhaps infamous, for its motto: “It’s Great to Be Alive in Colma.” Which is ironic, given that the town’s population of dead people far outnumbers its living residents by nearly 1,000 to one

Among the living is Joe Stinson, 72, a funeral director and owner of Colma Cremation and Funeral Services. Over the course of his decades-long career caring for the dead, he’s seen a lot of changes the industry. The latest? A growing movement toward eco-friendly burials.

“Green burials are changing how we, as a society, look at burying our dead,” says Stinson, who believes that just as our own deaths are imminent, so too is the widespread adoption of environmentally friendly deathcare options.

In the past few years, a wave of eco-friendly startups have focused on how humans can continue to be good stewards of the earth even in our afterlife. At its core, a green, or natural, burial minimizes environmental impact by reducing carbon emissions and making sure no harmful substances leach into the ground. This can include biodegradable caskets, like those made from handwoven willow or seagrass, or simple cotton shrouds. And the use of the toxin formaldehyde to preserve a corpse is a definite no-no. After an unpreserved body is lowered into the ground, it eventually decomposes, mixing and nourishing the earth around it.

According to the Green Burial Council, which provides eco-certifications for burial practitioners and products, the number of GBC-approved providers in North America has grown from one in 2006 to more than 300 today. (To be sure, that number is certainly higher, as deathcare providers don’t have to be GBC-certified to offer green and eco-friendly options.)

The arguments for a more environmentally conscious burial are mounting, literally, as the concrete, steel and wood we bury along with our dead piles up. (According to one estimate, there’s 115 million tons of casket steel underground in North America, or enough to build almost all the high rises in Tokyo.) What’s more, the formaldehyde used in embalming is a known carcinogenic, putting funeral directors at a higher risk for cancer. Then there’s the pollutants — from embalming fluid to the toxic chemicals used in casket varnishes and sealants — that can seep into the groundwater. As for cremation, that takes an environmental toll too, as the burning of fossil fuels emits harmful carbon dioxide into the air.

“This, by no means, should be at the top of our environmental priority list, but it is something that can be easily dealt with,” says Phil Olson, assistant professor at Virginia Tech who specializes in death studies. “What we need to be worried about is the crap we put in the ground with the body. We need to talk about the environmental impact of forestry and all the energy it takes to manufacture the metals in coffins.”

Sustainable caskets can be made out of willow, seagrass, bamboo and other biodegradable materials.

Most green deathcare providers are hybrid operations, offering both conventional and natural burial options, but there are a few in the U.S. that specialize solely in green funerals and burials. One such operation is Fernwood Cemetery, located in Marin County, Calif., about an hour’s drive north of Stinson’s funeral home in Colma. On any given day at the bucolic cemetery, which sits above the rolling hills above Sausalito, you’ll find people walking their dogs, riding bikes or just lounging about. The only clue that it’s a burial ground is the occasional boulder engraved with someone’s name.

“We had some people coming through who were lost and asked what park we were in,” jokes Cindy Barath, the funeral director for Fernwood.

As for costs, well, that depends on where you live — or, rather, where you die.

Anyone in the cemetery business will say that death is like buying a house; it’s all about location. And in cities such as San Francisco, where there is more space devoted to housing and mixed-use buildings, creating an affordable option for a green burial is still a ways off. Fernwood, for example, charges between $10,000 to $15,000 for a full funeral, with a large chunk of that money going toward buying a plot of land. Compare that to the national average for a traditional funeral and burial, which is about $8,500.

Still, the costs for a green burial can be significantly less than a traditional internment, since you’re not paying for body preservation, an expensive casket made of steel or exotic wood, or a concrete grave vault. And some in the green-burial movement are working toward a model where a separate plot for each grave isn’t even necessary.

In Seattle, Recompose — formerly known as the Urban Death Project — is designing a three-story human-compost facility that turns dead bodies into reusable soil. The ambitious project, started in 2014, is still years from completion. If it succeeds, though, the company plans to replicate the model all over the world.

“Things in this industry happen slowly,” says Olson, referring to the snail’s pace of getting conventional cemeteries onboard with green burials.

In this regard, both Olson and Stinson point to cremation, which was introduced in the U.S. in the late 19th century. But it wasn’t until almost a hundred years later that cremations became more popular than burials.

Stinson, for one, is ready for the sea change he believes will eventually sweep the entire industry. Noticing the uptick in people requesting greener options, he’s begun offering more eco-friendly options, such as caskets made of seagrass and biodegradable urns.

For years, Stinson says, burials have always been fairly black and white: Either you’re cremated, or you’re put into the ground.

Looks like now we’re finally seeing shades of green.

Complete Article HERE!

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Death with dignity: dying to die

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In May of 2016, Judith Dale was diagnosed with incurable Stage IV colorectal cancer that had metastasized to her liver and lungs. Having taken care of her mother when she was dying of cancer and witnessing its ravages, Ms. Dale wanted to die with dignity, something the California legislature permits patients with a terminal illness to do.

California, like several other states, has an End of Life Option Act (EOLOA) which “allows patients who have a terminal disease (with a life expectancy of six months or less) to request a life-ending drug prescription from their doctor.” Ms. Dale sought to avail herself of her rights under California law.

Sadly, she was denied that opportunity.

Ms. Dale would not have chosen her physician and medical center where she was treated unless they agreed to “respect and help facilitate her right to a more peaceful death via aid in dying,” according to the lawsuit filed against the physician and medical center. That lawsuit claims that the medical center and physician committed elder abuse/neglect, misrepresentation/fraud, negligent infliction of emotional distress, and negligence by failing to assist Ms. Dale with her final wish as it promised it would do.

As a result of the defendant’s failure, Ms. Dale’s “final weeks were brutal” and she suffered a “horrific death,” according to the lawsuit. This unfortunate story, which will be resolved in the courts, presents an opportunity for long-term care owners/operators and all healthcare practitioners to learn from it.

If not, they fail to do so at their peril, risking legal liability, among other adverse consequences.

States with End of Life Options Acts

Currently, five states and the District of Columbia have a Death with Dignity Act or End of Life Options Act. Those states are: California, Colorado, Oregon, Washington and Vermont. Montana does not have a statute regarding physician aid in dying, but its supreme court has ruled that state law does not prohibit a physician from honoring the wishes of a competent and terminally ill patient to receive a prescription that will hasten death.

In the states noted above, in order to receive a prescription for a lethal dose of medication, the patient must be at least 18 years old, be a resident of that state and have a terminal illness. Additionally, the patient must make two separate requests from his/her physicians at least 15 days apart.

As a safeguard, in the states that permit physicians to aid in dying, the physician must certify that the patient is medically competent to make that decision. In some states, such as Colorado, the patient must be referred to a consulting physician to confirm the diagnosis of competency.

The Colorado experience

Mount Evans Home Health & Hospice, in Evergreen, Colorado, was one of the Colorado hospices that had to determine its position and develop a policy and procedure after voters in Colorado passed the State’s first End of Life Options Act last year.

“The Mount Evans Home Health Care & Hospice Board of Directors felt it was important to engage in careful and thoughtful dialogue into the many complexities of this important issue,” said Charley Shimanski, President and CEO of Mount Evans. “This included elements such as supporting our clinical staff, weighing the differing board member viewpoints, and considering other support mechanisms available to patients/families.

“At the same time,” he adds, “we feel strongly that regardless of the path a patient chooses, we respect their choice and will provide the same comprehensive compassionate hospice services to all of our patients.”

Intersection of law, medicine, ethics

The issue of physician aid in dying is controversial at best and implicates the intersection of law, medicine and ethics. While the law allows for physician aid in dying in the states noted above, not all professional organizations have embraced or supported this growing movement.

For example, the American College of Physicians notes in its position paper that it “does not support legalization of physician-assisted suicide” in part because it “fundamentally alters the medical profession’s role in society.” Likewise, the Society for Post-Acute and Long-Term Care Medicine/American Medical Directors Association’s (AMDA) official position is that “AMDA opposes any physician involvement in assisted suicide or active euthanasia of any person regardless of age.”

Notably, professional organizations seem to have an evolving position on the issue of physician aid in dying. For example, the American Academy of Hospice & Palliative Medicine takes a position of “studied neutrality on the subject of whether PAD [physician assisted death] should be legally regulated or prohibited.” The Colorado Medical Society also took a “neutral” position when the issue was on the ballot, noting, “Ultimately, Proposition 106 [Colorado’s EOLOA] represents the most personal of decisions that must be left to our patients to determine.”

Mona’s final journey

Last Thanksgiving, I exchanged holiday greetings with Mona, a lifelong and dear friend. Days later, Mona’s sister called to say that Mona had had emergency surgery the day after Thanksgiving and then chose to be in hospice due to a terminal prognosis. I flew to the hospital/hospice facility in Nevada where my dear friend from childhood lay unconscious and slowly dying.

The “terminal morphine drip,” as it is referred to in medical community, kept Mona barely breathing and essentially unconscious for days. In spite of her decision for a hasty and dignified death given her terminal prognosis, she lingered in that unconscious state for days until she gasped her last breath.

As I held her hand, feeling completely helpless, I wondered if this slow ending was what Mona really wanted. Understandably, we may be reluctant to “let go” of loved ones but in the final analysis, each competent adult has the right to choose if he or she wants to die with dignity or soldier on and fight as long as possible.

In Mona’s case, she did not have the luxury of living in a state with an End of Life Options Act. And so it is with most terminally ill patients.

Recommendations

The most salient recommendation for long-term care providers is to have a well-reasoned policy and procedure, consistent with state law. If you are in the majority of states, the policy is straightforward: The law does not currently permit physician aid in dying, although that might change.

Consider how rapidly states began to legalize medical marijuana once that train left the station. For providers who are in states where physician aid in dying is legal, it is essential to have a policy that comports with your mission statement and values while respecting patients’ right. For example, hospice agencies in states with an EOLOA may choose to be “all in” and allow their medical directors and attending physicians to write the final prescription. Or, they may want no part of that process. Many hospices take a position in between the two extremes.

Few, if any decisions are as personal and far-reaching as the decision to end one’s life. Long-term care providers should be aware that it is likely that more state legislatures will enact End-of-Life-Options Acts. Until then, terminally ill patients will rely on the incredibly caring and competent long-term care providers, including hospices, physicians, nurses, and social workers, to ease their final journey.

Complete Article HERE!

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