Tag: Conscious Living

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My mother’s peaceful death

The author’s parents enjoying their retirement in New Zealand, 1991.

By Jane Peterson

[M]y mother’s last words were “It’s not working.” She slurred them before she fell into a deep sleep. Just prior to that, after ingesting medication mixed with applesauce, she had placed a plastic bag over her head and secured it. According to her meticulous research, this would hasten her passing.

Her death had been planned for months, if not years. Both my parents were members of The Voluntary Euthanasia Society in New Zealand, where they had retired from England to be close to my eldest sister and her children. Even though I had married an American and moved to rural Colorado, I was fortunate enough to be able to visit them every year and stay maybe two or three months.

Contemplating end of life

Our end-of-life discussions had been ongoing for many years, and both my parents were determined to die with dignity at a time of their choosing and before any needless and expensive medical procedures. Their wish was to pass away at home, as peacefully and as inexpensively as possible. As a family we agreed, with no hesitation. Now I pray that my sister and I can end our lives, legally, with the help of an enlightened physician, when quality of life is no longer an option.

My parents generally were in good health until my mother was diagnosed with rheumatoid arthritis at 82. This horrible disease was rampant on her side of the family—her beloved sister became ill in her 20s. She suffered mightily, without today’s wonder drugs that can alleviate some of the unpleasant symptoms, and died in her early 50s.

My mother had obtained a supply of Seconal from her doctor in London and had guarded her “stash,” with a mind to her eventual death. Despite the capsules being several years old, Mother did valuable research, including obtaining a prescription for anti-nausea pills, as well as taking six 10-mg Valium, with a glass of wine, before ingesting the lethal dose of Seconal. She had written separate goodbye notes to my father and to my sister and me. This was necessary to exonerate her family members in aiding and abetting her demise.

The final weeks of her life were filled with joy and laughter, and the planning took on a military aspect that my father, a lieutenant colonel in India during World War II, reluctantly took part in. I can honestly say that we had never laughed so much, despite the looming event that was ever present.

My mother’s pain was becoming increasingly unbearable and even sitting up in bed caused her appalling agony. The family doctor (they still made house calls in New Zealand) had given her Prednisone and Methotrexate. However, throughout her life, my mother had been unable to tolerate strong medications and she was terrified that the Prednisone was making her blind. The Methotrexate, on the other hand, messed with her mind. To our horror, a few weeks before, we found her lying outside in the driveway, in the pouring rain at 3 a.m., crying softly for help.

Goodness knows how long she had been there, and thank God I needed to use the bathroom in the middle of the night. When I checked her room and she was not in bed, I alerted my father. She was taken by ambulance to the nearest hospital and she remained there to be stabilized for a week.

Dying with dignity

Trying to keep on an even keel the morning of her death, I heard her speaking with my father who was asking her (again) if this was what she really wanted. I was cleaning up in the kitchen, and I am not ashamed to say that I lost it. I was privileged to have exceptional doctors in America and was prescribed suitable medication to help me through difficult times. This was definitely one of those occasions and I make apologies to no one.

Darling, darling Mother! So adamant that she could leave my sister and me as much money as she was able. She needed relief from her torture and, thanks to a long relationship with her family doctor in England, she was able to obtain it, in her own bed, surrounded by loving family. My sister and I monitored her pulse. It became weaker and weaker, until it was apparent that she had passed. The whole process took less than one hour.

It remains the most spiritual experience of my life, and I was similarly affected when my father died at home, just over a year later. Desolate after my mother’s death, he lost the will to live and had even asked my sister about getting a gun.

He passed away a week after being placed in a morphine-induced coma by his physician, so there was no verbal contact in his last days. Although he did not have to resort to my mother’s method, he succumbed to an illness that had no name since any diagnosis, advice or procedures that might have prolonged his life were adamantly refused. I suspect it was pancreatic cancer that prevailed.

He died around 11 a.m. on September 1, 1996, with me by his side, holding his hand and professing my love.

The right to make our own choices

As before, with my mother’s death, the funeral director who came to the house was incredibly disappointed when my sister and I firmly rejected his top of the line caskets. My parents always said that they wished to be cremated in matchboxes, a standing joke in our family for many years.

I give thanks every day for my parents’ decisions. My friends are coping with family members suffering from Alzheimer’s, dementia and worse. Their loved ones die in hospitals and nursing homes, lives needlessly prolonged. It results in loss of dignity, immeasurable suffering and devastating financial consequences.

I am so encouraged that more states have passed laws enabling physician-assisted dying (end-of-life options). To those of a similar persuasion, I urge you to become members of Compassion and Choices, based in Denver and available at 800-247-7421 or www.CompassionAndChoices.org. This progressive organization endorses Death With Dignity, and was instrumental in the Colorado voters passing the End-of-Life Options Act, now legalizing medical aid in dying. They continue their efforts in all states.

We should all be so fortunate to have the legal right to pass as we wish, and I say no state or federal agencies have any right to dictate how we make personal medical decisions.

Complete Article ↪HERE↩!

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How to Prepare, Just in Case You Die Young

Nobody wants to imagine it. But you can disaster-proof your affairs with this checklist.

Insurance, wills, the POA (power of attorney)—they all matter in making things more manageable for survivors.

By Chana R. Schoenberger

[F]ew estate plans consider the possibility of an early death. That is a potentially disastrous mistake, experts say.

By the time you’re in your 40s, you likely know someone, or know of someone, who has died young. That is why it is important for people to draw up plans as soon as possible, including accounting for what will happen should death occur in middle age, with children still at home.

We spoke with estate-planning lawyers to ask what end-of-life documents and estate plans a 30- or 40-something would need to assemble (aside from tax-planning help, for which an accountant or tax lawyer should be enlisted). All recommended getting started right away with this checklist:

INSURANCE

Life insurance can be expensive, but it ensures that if a spouse should die young, his or her partner can stop working or downshift careers to take care of the children. People often buy life insurance for themselves when their children are born, so the surviving spouse won’t have to worry about having money for tuition or the costs of raising children as a single parent.

“It’s best if you can buy guaranteed renewable term insurance when you’re still insurable and have no underwriting risks, while you’re still relatively young and before you have any diagnoses,” says Joe McDonald, an estate-planning lawyer at McDonald & Kanyuk in Concord, N.H.

It’s also advisable to buy long-term-care insurance, though it is becoming more expensive as policyholders live longer. Many employers also offer disability insurance to replace a certain percentage of salary if the employee becomes incapacitated, says Joshua Kaplan, an estate-planning lawyer at the law firm Dechert in New York.

WILL

Everyone needs a will. Without one, depending on the state of residence, it could take weeks or months for an estate to make its way through probate court until a judge appoints an executor to wind down the deceased’s financial affairs. During that time, heirs may not be able to access the money left to them or even write checks to pay their bills.

Often state rules say that every person named in a will as the recipient of property needs to receive written notice that the will is in probate.

“It’s often simpler to leave everything to one person or a class of person, like your children, and then have them distribute,” says Mr. Kaplan. His grandmother did this, leaving everything equally to his aunt and father, with a letter explaining which relatives should also get certain items.

Once the will has been made and signed properly, where should it be kept? Somewhere safe, where the family can find it, such as with a lawyer. But be sure to tell someone in the family where it is.

“Don’t leave it in your safe-deposit box unless someone is the second signer, or you won’t be able to get to it,” says Sharon Bilar, an estate lawyer who has a practice in New York.

BENEFICIARIES

When you set up a bank account or any financial account, you’re typically asked to name a beneficiary to inherit it if you die. Such an account will pass directly to that person without going through probate, so make sure your beneficiary designations are up-to-date. You may have designated your siblings when you started working and set up your 401(k), for instance, but now you’re married and want to designate your spouse.

You also need a secondary beneficiary, in case something happens to your first choice (suppose, for example, that you and your spouse are in a car crash together). A trust can be a beneficiary as well. If there isn’t a space on account-opening forms for a secondary beneficiary, call the financial institution and request to add this person.

Generally, your children will be your secondary beneficiaries, after your spouse. Be careful of designating as secondary beneficiary an adult whom you would like to take care of your children, Ms. Bilar says.

“If you make anyone the beneficiary who’s not your child, that money legally belongs to the beneficiary, and you cannot force that person to spend the money on your child,” she says.

POWERS OF ATTORNEY and PROXIES

“If you’re worried about passing suddenly or becoming suddenly incapacitated, the legal documents you should have are some sort of health-care advance directive and a living will,” Mr. Kaplan says. A health-care proxy appoints one person, older than age 18, to act on your behalf when making medical decisions. If you don’t have this document signed and something happens to you, your spouse will have the right to make these decisions for you, followed by your adult children and your parents. Make sure to designate a first- and second-choice person to be your proxy, Mr. Kaplan says.

You’ll also want to sign a living will, which lays out your intentions for end-of-life care, such as when to withhold treatment if doctors determine you’re not going to recover, and whether you wish to be an organ donor. This is important if you are in an accident or otherwise become incapacitated. Because wishes often are driven by religious and other personal moral concerns, it is important for couples to discuss their own preferences, Mr. Kaplan says.

GUARDIANSHIP

When there are children under 18, the most important step in estate planning is to decide who should raise them if both spouses are gone. This preference goes into your will, where a judge will almost always honor it when deciding whom to appoint as guardian. If you don’t have this designation in writing, you’re leaving it up to the court to decide who will take care of your children. “It’s best if spouses both name the same people in the same order” when they choose a guardian for minor children, Mr. Kaplan says.

The guardian you select for your child doesn’t have to be the trustee of any trust you set up for your child—although it is easier if they agree on how to spend the money to benefit the child.

“Some people want the trustee to put the brakes on the guardian spending money for the child, to act as a check and balance,” says Mindy Stern, an estate lawyer at Schwartz Sladkus Reich Greenberg Atlas in New York.

Every additional piece of information survivors have about the deceased’s affairs can make the hours and days after a person dies easier. Survivors should have access to a file that contains insurance information; a list of all your bank and financial-institution accounts, “529” college-savings accounts and retirement accounts, with beneficiary information; a list of all your credit cards, as well as any household expenses that are set on auto-pay; and details on where to find the deed to the house and the cemetery plot, plus the key to the safe-deposit box.

Also keep a list of online accounts and their passwords, as well as information on airline frequent-flier miles, and the credentials to any cryptocurrency wallets you hold, Ms. Bilar says.

Complete Article ↪HERE↩!

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A Better Way for Families to Care for Dying People

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

[A]lthough 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.’

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

[S]he 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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Black people must command end-of-life care

By Brandi Alexander

[A]s 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?

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

[F]or 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.

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Death with dignity: dying to die

by Alan C. Horowitz, RN, JD

[I]n 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↩!