Tag: End of Life Care

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The End of Life Debate

— More states and countries are enacting laws to let terminally ill patients in great pain decide for themselves when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

A person holding a "end of life consultation" pamphlet. Next Avenue, end-of-life debate, medical aid in dying
A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words Matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, DC, where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where It Is Legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

  • Patients must be adults with a terminal illness and a prognosis of six months or less to live.
  • Attending physicians must verify patients are acting voluntarily.
  • Patients must be able to make and communicate their decision to health care providers.
  • Patients must be able to self-administer (ingest) the medication.

Differences Among Laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Headshot of a woman. Next Avenue, end-of-life debate, medical aid in dying
Kim Callinan, Compassion & Choices

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute non-resident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

Fine-Tuning Legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Complete Article ↪HERE↩!

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Vermont Removes Residency Requirement for Medically Assisted Deaths

— The change, signed into law by the state’s governor, followed a legal challenge brought by a 75-year-old Connecticut resident.

Lynda Bluestein is the first nonresident to be granted medically assisted life-ending care in Vermont.

By Livia Albeck-Ripka

Vermont has become the first state to remove a residency requirement from its law on medically assisted death to allow terminally ill people from out of state access to life-ending care.

The law, which for a decade has permitted doctors to prescribe life-ending medication to terminally ill people 18 or older, was amended Tuesday, when Gov. Phil Scott signed a bill scrapping the residency requirement.

The measure passed Vermont’s Senate and House last month following a legal battle brought against the state by a 75-year-old resident of Bridgeport, Conn., who has late-stage fallopian tube cancer and argued that Vermont’s restriction was unconstitutional. The state waived the residency requirement for the woman, Lynda Bluestein, as part of a settlement in March.

“I was always hoping that the Legislature would change the law and make it open to everyone,” Ms. Bluestein said by phone on Tuesday. “I was really thrilled.”

While Vermont is the first state to formally remove the residency requirement from its medically assisted suicide law, Oregon health authorities agreed in 2022 to stop enforcing its residency provision as part of a settlement in a similar federal lawsuit. A bill seeking to remove the requirement has since passed Oregon’s House. The state was the first to pass a medical aid in dying law, which took effect in 1997.

Several other states and the District of Columbia allow terminally ill residents access to life-ending treatments, but most do not permit nonresidents to access their care.

Advocates for improving end-of-life care said on Tuesday that they hoped other states would follow Vermont in allowing people to cross state lines to end their lives with dignity.

“Support for this is widespread and bipartisan,” said Kimberly Callinan, the chief executive of Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. “People universally want to be able to make decisions over how they die.”

But critics of assisted-dying laws argue that the practice remains a matter of contention. “There continue to be legitimate and serious concerns,” Mary Hahn Beerworth, a lobbyist with Vermont Right to Life, testified before a legislative committee earlier this year.

“Vermont Right to Life opposed the underlying concept behind assisted suicide and opposes the move to remove the residency requirement as there are still no safeguards that protect vulnerable patients from coercion,” Ms. Hahn Beerworth said. She noted a number of other concerns, including what might happen if the patient decided not to use a lethal dose of drugs, and instead took it back to their home state. She added, “If the drugs are taken and death occurs in Vermont, what happens with the body?”

Jennifer Popik, a spokeswoman for the National Right to Life, said in a statement that the organization was “deeply disappointed that Vermont is now poised to become a tourist destination for assisted suicide.” The laws, she added, posed a danger to “vulnerable groups.”

But Cassandra Johnston, 38, a resident of New York who has stage three breast cancer, said that Vermont’s law change on Tuesday had given her peace of mind, knowing she could go to the state to access care if needed. “This should be the standard of medical care, not the exception,” Ms. Johnston said.

Ms. Bluestein, whose legal battle preceded Vermont’s rule change on Tuesday, said that she still planned to go there when the time came for her to request life-ending medication.

Having such an option, Ms. Bluestein said, meant she could die on her own terms, surrounded by her family. She added, it’s “a tremendous relief.”

Complete Article ↪HERE↩!

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Dealing with death and dying

— How to protect your psychological health

By Bianca Iovino

Aged care staff face a variety of challenges that come with their work and dealing with death, dying and grief is an unfortunate reality of the job.

When frequently dealing with the death of people you are caring for, particularly if you have a strong relationship with them, intense feelings of grief and loss often arise which can be harmful if not dealt with.

Grief is a common response to death. Everyone expresses grief differently and no one can tell another how they should grieve, but it is important to know where to turn to when you are in a state of bereavement and still need to work in the industry.

The Australian Psychological Society acknowledged that aged care workers should be trained to deal with the challenges of their job properly, particularly in areas where trauma or workplace injury may occur, such as the death of a client. But access to psychological services, particularly through your workplace, can be limited as the country faces a shortage of psychology professionals.

Just yesterday, The Medical Journal of Australia released findings that evidence‐based mental health and wellbeing programs are needed for workers in health and aged care organisations to alleviate the ongoing mental health and wellbeing effects of workplace shortages, considerable physical and psychological demands of the job as well as the COVID‐19 pandemic.

As it is in the nature of a carer to do just that – care for others – it is also important for you to care for yourself when you’re feeling weighed down from bereavement.

So what can be done to protect your psychological health?

Heightened exposure to grief in aged care

Exposure to repeated instances of death and grief has been linked to burnout and overwhelming stress in many aged care workers.

Aged care workers are battling staff shortages, increased responsibilities and are still feeling the impacts of the COVID-19 pandemic, increasing the likelihood of experiencing burnout even more.

Grief can also be complicated or prolonged which can be persistent, debilitating and lead to serious psychological distress.

Aged care staff can experience grief more intensely after a resident’s death if:

  • They were particularly close to the person who passed
  • They have limited confidence in caring for people at the end of life, or in talking about death
  • They are facing other stressors, such as heavy workload demands or conflicts and pressures at home
  • COVID-19 can also add to the grief experienced by aged care staff as they are under increased pressure to provide end of life care when family and volunteer visits are limited

Managing grief and bereavement at work

After experiencing death and loss, you may feel the need to start distancing yourself from clients in the name of self-preservation.

You’re not alone. Since the pandemic, many working in the health and aged care field have said they are experiencing compassion burnout – putting the care of vulnerable older Australians at risk. But this strategy probably won’t help you and learning ways to cope with grief can help you build the emotional resilience needed to be the best carer you can be. You can grieve and still care well.

As a first step, it is important for you to acknowledge your feelings of loss and grief. Think about how you are feeling, why you may be feeling it and identify if you think you need to take more steps to help you mitigate these, often intense, feelings.

If you have decided you need more help and support, you can lean on your workplace and fellow colleagues to talk out your feelings and experiences.

Aged care supervisors and staff can support each other by debriefing after a client dies and listening in a non-judgmental way. You may also decide to organise a memorial or attend the client’s funeral if you wish.

Staff should be given time and a private space to debrief after a resident’s death to honour the loss, sign condolence cards for the family and share information about the end of life caring experience. You can ask to know your organisation’s support policy by talking to your supervisor as this should be outlined in an Employee Assistance Program.

Managing grief and bereavement at home

When something happens at work, it’s not easy to simply leave it at the door.

Developing self-awareness is an important step in mitigating the feelings and experiences associated with bereavement and grief. By identifying your strengths and weaknesses as well as understanding why you react the way you do in certain situations, you can better manage your emotions rather than being overwhelmed by them.

If grief and bereavement are becoming unmanageable and starting to impact your home life, maintaining self-care practices is paramount to getting through.

Taking time to rest and relax is key to avoiding burnout and keeping stress levels under wraps.

Where possible, spend time with friends and family so that you have opportunities to talk about your feelings and experiences and also maintain your sense of community support and social connection.

As always recommended, maintaining a healthy diet and exercising in some capacity helps with feelings such as sadness and loss. But you may find you still need a bit more support to help you through.

Seek help by talking to a General Practitioner (GP), a counsellor, a psychologist or other source of professional support.

There are specific bereavement services to help you with grief and loss which may even be available to you through your employer, given the nature of the job.

Dealing with death and dying is no easy feat. We all experience grief loss in our lives but for aged care staff, this reality is constant.

Knowing what to do, where to turn and what supports are available to you when you lose a resident are important pieces of information that can help you grieve healthily while still caring.

Complete Article ↪HERE↩!

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How to Support Someone with a Terminal Illness

Terminal illness, sometimes called ‘life-limiting illness,’ is a condition or illness which cannot be cured and is likely to lead to death. Death is, of course, a natural part of life. Everyone dies and many (if not most) of us are afraid of it. Our brains don’t do well with the idea of death, in fact, researchers say that our brains shield us from the existential fear around dying.

Yair Dor-Ziderman, a researcher at Israel’s Bar Ilan University, says this: “The brain does not accept that death is related to us. We have this primal mechanism that means when the brain gets information that links self to death, something tells us it’s not reliable, so we shouldn’t believe it. We cannot rationally deny that we will die, but we think of it more as something that happens to other people.”

So what, then, do we do when someone we are close to is diagnosed with a terminal illness or life-limiting condition? How do we face down that existential fear and help? Or cope? Or help them cope?

Advanced cancer, dementia (like Alzheimer’s and others), lung disease, multiple organ failure, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, AIDS, Amyotrophic lateral sclerosis and adult failure to thrive are among conditions and illnesses which can become terminal.

What a person with a terminal illness may be experiencing varies from person to person and from moment to moment. These feelings may come one at a time, in groups or they may cycle and include:

  • Denial
  • Fear
  • Shock
  • Sadness
  • Resentment
  • Anger
  • Relief
  • Acceptance

People’s reaction to the news that they have a terminal illness comes in stages. The way we react to the news that a friend or loved one has received a terminal diagnosis is equally varied. There’s no standard reaction, and there’s no such thing as a right or wrong reaction. Some people feel numb at first, as though what they’re being told doesn’t make sense. Some are immediately frightened, others may initially appear very matter-of-fact.

At the consultation or doctor’s visit, after a person hears that his or her illness cannot be cured, they may be unable to process or retain information that comes afterward. The diagnosis is simply too much to take in. Friends and loved ones may experience the same thing. If you find yourself in the difficult emotional space of helping someone you care about deal with the premature end of their life, look for ways to support the person, their caregivers and yourself.

Some tips:

Don’t assume. For example, don’t automatically count someone with a terminal illness out of gatherings, trips or socializing. Someone with a life-limiting illness is first and foremost a person, with interests and an identity outside of their prognosis. If you aren’t sure whether a loved one would like to get together, invite them and let them decide.

Try not to focus on the illness. While you may feel the need to talk or ask about the person’s illness, it’s a better plan to allow them to determine when and how much to talk about their health. People living with terminal illnesses can feel removed from everyday life, or reduced to only their medical condition. Some may feel that the person they were before diagnosis doesn’t exist anymore, and they may miss the autonomy they had before. When an illness progresses, the person living with it loses control of so much – when to eat, caring for themselves, sleep patterns – so any sense of control you can help them maintain is a very good thing. Even if it’s as simple as when or if to talk about their illness.

Avoid describing the person as ‘dying.’ It’s natural. When someone has been given a terminal diagnosis, ‘dying’ is the word that comes to mind. Remember, though, that to them they are very much still alive, even though their time might be limited. Technically, also, a person is only ‘dying’ at the moment of death. Until then, he or she is living with a life-limiting illness. A fine distinction? Perhaps, but fine distinctions are often the most important distinctions.

Remember caregivers. You really can help someone by supporting their primary caregivers. People caring for seriously ill loved ones need relief. Ask if they need an afternoon or evening off. Hug them if they’re huggers. Make a meal, bring them a coffee.
Rephrase! Don’t say “It’s going to be okay” or ask “How are you?” It’s insensitive to say it’s going to be ok to someone whose fate has been sealed by illness, especially if we don’t know where they are in their processing/mourning process. Instead, ask how they are feeling today. Of course it’s natural to open a conversation with ‘how are you,’ but asking how a person is feeling today helps keep the focus on the moment at hand, and is less overwhelming than asking a big, open-ended question.

Jump in and help. If you tell some to let you know if they need anything, that’s vague. It might even feel meaningless, even if you really want to help because it’s non-specific. Just jump in. Visit often, or call. Ask if you can tidy up the kitchen or take care of some laundry. Ask for a grocery list and mark that chore off the list or mow the yard.

Don’t give up. Someone with a life-limiting illness may not feel well enough for visitors all the time, but don’t try once and then throw in the towel. Living with a terminal illness is difficult and unpredictable. Everyone’s emotional bandwidth is limited – people dealing with end-of-life issues may find that their bandwidth is much narrower or fluctuates more than before. Keep checking in.

Make it a no-phone zone. Sometimes we check our phones without even thinking about it, but if there’s a time to put it away, it’s when you’re spending time with someone whose life has been shortened by disease. Be fully present for them.

Say something. Even if you aren’t sure what to say, something is almost always better than nothing. It could be as simple as ‘I’m thinking of you,’ or ‘I love you.’ You don’t have to directly address the illness or condition, in fact it may be a relief for the person to not talk about it. Speak from a place of kindness and it’s hard to go too far wrong.

Feel what you feel. You may find yourself dealing with anticipatory grief, which is similar to the grief we experience after someone dies. There are differences to be aware of. There is often more anger. You may not know how you feel – holding on and letting go at the same time. Anticipatory grief is a deep sadness which is hard for anyone who hasn’t experienced it to understand. Not everyone will feel anticipatory grief, and it’s neither right nor wrong. Don’t go it alone – talk to someone about your pain. Find a friend who doesn’t judge and speak openly and honestly, making it clear that you don’t need them to fix anything but just to listen.

Complete Article ↪HERE↩!

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Rabbi Laura Geller helps people ‘get good at getting older’

By Shannon Levitt

A few years ago, when Rabbi Laura Geller was still the senior rabbi of Temple Emanuel in Beverly Hills, California, she began to notice that many of her older congregants had started to drift away and she wanted to know why. At the time, she was also contemplating what her life after retirement might look like. So, she and her husband, Richard Siegel, decided to take the questions they were already posing to themselves and ask them of other seniors.

So began a listening journey that would result in “Getting Good at Getting Older,” a National Jewish Book Award finalist published in 2019.

Gathering small groups in private homes, Geller and Siegel spoke to about 250 congregants about what keeps them up at night, what gets them up in the morning and, without a job and colleagues, who they turn to for community.

“What we discovered is that people have fears of becoming invisible and becoming isolated. Your friendship network changes as you grow older and people that used to return your calls don’t anymore. People were concerned about purpose — “What will I do all day?” — and about becoming, “God forbid,” dependent,” Geller told Jewish News.

On May 3, Geller will present some of her findings about the importance of continually building relationships, making a difference, getting involved and giving back at an invitation-only Lion of Judah “Cocktails and Conversations” event.

“After hearing Rabbi Geller’s presentation at the International Lion’s Conference in Scottsdale this past December, we thought she would be the perfect speaker for our upcoming event,” said Gail Baer, vice president of philanthropy for the Center for Jewish Philanthropy of Greater Phoenix.

Geller’s book investigates the period between midlife, when people build careers and raise families, and “frail old age” — what gerontologist Barbara Waxman termed “middlescence.” Just as adolescence came to be understood as a distinct stage of life, neither childhood nor adulthood, the longevity patterns of this century have constructed something new at the other end of the age spectrum.

At last December’s conference, Geller attended two “overflowing” seminars on the topic led by Waxman.

“A lot of people want to talk about this and learn how to engage the experience, the talent, the passion, the resources of this age cohort,” Geller said. The day after her own book on the topic was published, it was number one on Amazon’s Jewish life section.

The book was also a kind of bookend to the seminal “Jewish Catalog,” the series of guides to “do-it-yourself” Judaism that Siegel had co-edited decades earlier. It was a best-seller for the Jewish Publication Society and attracted young Jews by popularizing an ethos of pluralism and gender egalitarianism.

Because Siegel and Geller were now themselves part of a cohort of older Jewish Americans facing new issues, “Rich really felt that we needed another Jewish catalog about how to navigate the challenge of growing older,” Geller said.

Sadly, while working on the book, Siegel was diagnosed with cancer and passed away before its publication. He was in the strange position of working on a book about getting older, a privilege he wouldn’t experience for himself. Ironically, the couple researched things for the book, like end-of-life issues and how to plan a funeral, that they used to deal with their personal situation.

“When Richie really did get sick, he had a really good death because there was nothing we hadn’t already talked about. A good death is if you’re lucky enough to be able to die at home, surrounded by people you love and there is nothing left unsaid. I’m very grateful for that,” Geller said.

During their listening campaign, Geller was surprised by how many people hadn’t had some of those tough conversations with their adult children. The book provides a how-to toolkit for people for that and many other topics, including making friends, giving back, getting involved, leaving a legacy and telling one’s story before it’s too late.

After the book’s publication, Geller was invited to speak at synagogues and Jewish community centers across the country. Once COVID-19 restrictions made travel impossible, she started doing virtual presentations.

“It was a wonderful opportunity to visit lots and lots of places because the cost was so much lower, and I spoke to at least 100 places virtually,” she said. Sometimes it was to a group of 20 people and sometimes more than 100. Despite the size, it was clearer with every conversation how much people wanted to talk about their fears and hopes.

During the Q&A period, someone might ask for advice on how best to downsize their households or give things away. Another person might chime in to say what they had done. Though these people might be in the same congregation, they didn’t know each other well enough to ask these questions before Geller’s appearance prompted them.

“Through these conversations, they were able to help each other because, even though we are the curators of our own lives, the truth is we are all figuring out what it means to be in this new life stage and we can really help each other do that,” Geller said.

While promoting the book, Geller kept learning, and if she were writing it again, she would likely spend more time writing about loneliness and isolation, she said.

A majority of people she’s spoken with want to stay in their homes, but that might entail several changes in terms of creating or modifying their community. A focus on building intergenerational connections can assist with that goal.

She also has a message for the Jewish establishment that focuses most of its resources on families with young children, which she calls “a myopic view.”

“I’m also part of the Jewish future with my experience, my wisdom, my resources, my talent, my desire to serve and my need to be in connection with different generations. That’s an asset in the Jewish community and to the extent to which that’s not acknowledged — they’re losing an incredibly important talent pool and that challenges the Jewish future,” she said.

Complete Article ↪HERE↩!

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What is a death rattle?

— What to expect when expecting the end of life

By Julie Power

What is a good death? What is a death rattle?

No question is off limits for palliative care nurse specialist Rachael Zielinski, who tells families and relatives that death and dying are not something to whisper about.

To make her point, she raises her voice. “As a community we need to reclaim the experience of death and dying. It is OK to talk about it,” she tells a workshop called Last Days attended by 20 people in Sydney’s south.

A palliative care nurse with 20 years of experience, Zielinski also wants to bring back the D words: death, dying and dead. Euphemisms like “passing” or “gone” can be confusing, she said, recounting the confusion of a woman who didn’t realise her death was imminent.

About 160,000 people die in Australia each year. Zielinski has seen hundreds die.

Every Christmas Day she remembers the first death she saw: Mrs Merriweather’s nearly 40 years ago.

Then only 18 and living in Sandgate, England, Zielinski sat with the older woman in her final moments and then kept vigil next to the woman’s body.

Last Days was developed by aged and community care provider HammondCare to demystify death and help people navigate death and dying. More sessions across Sydney have been funded by NSW Government’s Sydney North Health Network.

HammondCare’s Dr Andrew Montague said carers, family members and friends were often unprepared for what may be confronting at end of life.

“There is a need to help those who care for people at end of life to equip them to navigate their journey,” said Montague, the general manager health and hospitals. “It will also seek to encourage more openness in making and documenting end-of-life choices.”

According to a survey of 1000 Australians last year by Palliative Care Australia, 88 per cent of respondents agreed it was important to start thinking and talking about their wishes and preferences for care (if they were to become seriously or terminally ill). Despite that, only 56 per cent of those surveyed had talked about or recorded their end-of-life wishes.

Katrina Pearson was at the session to discuss how to manage the palliative care of her mother Robyn, now 72, who was diagnosed with a degenerative disease 11 years ago.

Pearson spoke with her mother about her wishes – before she agreed to go into an aged care facility when she could no longer walk. “It is important to talk about it, and it was good that we talked when she was able to do so.”

Research from Western Australia’s palliative care experts found many people thought palliative care was for the last days of life, thinking their doctor or specialist had given up. Yet research from the United Kingdom found people who receive palliative care earlier live longer and have a better quality of life.

Zielinski said: “We love early referrals. When we get people who are in the terminal phase, we get upset. We could have done so much more.”

Palliative care’s practical aspects include writing a will, delegating someone to make decisions about care, managing symptoms and pain, and identifying what is important in the final days and where and how someone wants to live and die.

Often the wishes of the dying are far from grandiose, such as a desire to eat at a local restaurant once more, look out on a garden, have grandchildren visit or have their dog on the bed.

“Many want to stay at home, in their same bed, but may change their opinion,” Zielinski said. “Dying in a hospital is not a failure.”

But dying at home takes a village.

Zielinski hopes the Last Day’s three-hour workshop and workbook will provide a place to ask questions and challenge preconceptions that caring for someone at the end of their life is something technical, private and hidden.

“Death and dying are the last taboo. We are all going to die, and many of us will care for someone who is dying.”

Death was a process like birth, with recognisable stages and progression, said Zielinski. Unlike birth, though, there are few workshops for families, and no books on “what to expect when you are expecting [to die]” or film adaptations.

The person dying usually sleeps more and eats and drinks little or nothing, which can upset families used to making food to demonstrate love and affection.

“Someone in their last days may only want a tiny spoonful of yoghurt,” she said.

The dying person may attempt to eat to show their love, too.

She recalled a woman who made her husband a grazing plate of a tiny piece of “posh chocolate”, a minuscule bit of sandwich, and fruit.

“He took a little nibble from the sandwich and put it back,” Zielinski said.

That upset his wife.

“I said [to her], ‘That is just the most beautiful thing I’ve seen. It’s a pure gift of love. Look at that, he actually doesn’t need or want it.’ So it’s about education. It’s about understanding those changes.”

Families frequently find “the death rattle” – experts call them terminal secretions – distressing because they think the person dying may be in pain or anguished.

“It is like a snore, which you are not aware you are doing,” she said.

It is caused by uncleared mucus at the back of a throat, she told the workshop. “That gurgly sound you hear, well, that person is so deeply unconscious, they’re not aware that that saliva is sitting there – that they are not trying to cough or swallow to get rid of it. But the sound will distress you. So remember that Rachael said this might happen. It’s not distressing Mum or whomever that is.”

Many deaths are gentle but a few are traumatic. In those cases it is often the words of a carer or a family member, even a prayer or a kind word, that make more of a difference than any medicine.

That was the case with a deeply religious woman who couldn’t be calmed until a pastoral care worker kneeled with her and prayed. She died soon after.

“I have never seen anything like that,” said Zielinski. “We [health professionals] can’t do what [family and friends] can do. We are empowering people to think they have a place.”

A pilot of the program over the past two years found 73.9 per cent of participants strongly agreed that they know more about how to support a person in their last months, weeks and days of life, while nearly 70 per cent understood what to do to relieve physical symptoms.

Complete Article ↪HERE↩!

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Respecting patient autonomy and the importance of hospice care

By Paul B. Hofmann, DrPH, MPH

A KevinMD article about Jimmy Carter’s end-of-life care decision, “The heartbreaking story of Jimmy Carter: a call for Medicare reform in end-of-life care,” indicated that the former president’s decision was heartbreaking. However, I have a different view. In my opinion, the 39th president, at age 98, made an autonomous and well-informed decision.

On February 18, The Carter Center announced in a statement that “after a series of short hospital stays, former U.S. President Jimmy Carter decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team.”

In the March 29, 1984 issue of USA Today, I stated that “often there is an obscure point in the continuum of intensive treatment when it is death, not life, that is being prolonged. We must remember that pneumonia, once described as the old man’s friend, has died. Thus it is even more important that patients be allowed to remain the beneficiaries of modern technology, not its victims.”

In the Spring 1994 issue of Stanford Medicine, I wrote that “with distressing frequency, we’re doing too little for patients and too much to them. Real caring often means choosing not to perform invasive diagnostic and therapeutic procedures that extend the dying process instead of improving life.” When a patient in the ICU or on a medical surgical unit is unlikely to survive to be discharged, studies have confirmed that a DNAR order, along with a focus on comfort measures emphasizing pain and symptom management, not only extends a patient’s remaining days but also improves the quality of his or her life during this period.

A column co-authored with internist Lawrence Schneiderman and former chair of the ethics committee at the University of California, San Diego Medical Center, published in the May/June 2007 issue of the Hastings Center Report, was titled “Physicians Should Not Always Pursue a Good ‘Clinical’ Outcome.” Although good clinical and patient outcomes are usually aligned, this is not always the case. Predictably, cardiologists are proud of helping the patient maintain a strong cardiac output, nephrologists want to make sure the patient’s kidney function is adequate, and pulmonologists properly concentrate on lung capacity and viability. However, if the patient has metastatic cancer with no likelihood of survival, timely referral for hospice services should be the priority. Under these circumstances, death should not be viewed as a medical failure. Conversely, causing or allowing a bad death represents an ethical failure.

An article co-authored with Douglas Van Houten, assistant chief nursing officer, Washington Hospital, Fremont, CA, appeared in the January/February 2014 issue of Health Progress. It was titled “When the ICU Is Not the Answer.” We identified ten recurring issues that characterized many cases when we conducted ethics rounds. For example, one such issue was “Staff members are concerned and uncomfortable when asked to provide treatment they feel is not in the patient’s best interest, and they experience moral distress in providing what they consider painful and inappropriate treatment.” Consequently, 12 guidelines were recommended based on preventive ethics to reduce the number and magnitude of issues potentially compromising patients, families, and staff members. The first guideline was “As early as possible after a patient’s ICU admission, assuming the patient is unable to express his or her preference (and has prepared no advance directive regarding such preferences and a designated surrogate), family members or friends should be asked for information about the patient’s values, goals, and any previously stated treatment preferences. Potential treatment goals are identified by the patient’s principal attending physician in light of this information, and expectations are clarified.”

Unfortunately, patients near the end-of-life are often referred for hospice services and palliative care belatedly. Instead of lamenting President Carter’s decision to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention, the author should have endorsed and applauded this decision.

Overall, it is important for health care providers to recognize the limitations of medical interventions and respect patients’ autonomy in making end-of-life decisions. As health care professionals, it is our duty to provide patients with all the information they need to make informed decisions and support them in their choices. Hospice care and palliative care can provide patients with a more comfortable and dignified end-of-life experience, and we should strive to ensure that these options are available to all patients who need them.

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