90 percent of dying mothers worry about their young children.
Dying parents with young children could benefit from more support and care, a new study concluded.
“What is unique about patients with young children is the extraordinary psychological suffering related to parenting,” lead study author Dr. Eliza Park explained reported by FOX News. “The patient in these situations truly is the entire family unit.”
For this study, the Park, who is a psychiatry researcher at the University of North Carolina at Chapel Hill, and colleagues, surveyed 344 single fathers with young children who had lost their partner due to cancer. The typical family included at least two children under 18-years-old with the youngest one being about eight-years-old.
The participants’ deceased spouses had an average age of 44. Roughly 43 percent of the women had cancer that metastasized by the time they were diagnosed. About 66 percent of them had received hospice care. 41 percent passed away at home and about 50 percent died at a location that they had picked.
Based on the fathers’ reports, 38 percent of the patients did not say their farewells to their children prior to dying. 26 percent of the women were not at peace with the fact that they were dying. 90 percent of the fathers stated that their wives had continued to worry about their children’s wellbeing.
“Having more time with their children without being a burden to their family is often their primary goal,” Denice Sheehan, a researcher at Kent State University College of Nursing, who was not involved with this study, said to FOX via email. “Mothers tend to worry about how their children will live without them, who will take care of them and nurture them throughout their lives.”
Sheehan is also the director of clinical research at Hospice of the Western Reserve located in Cleveland, Ohio.
The team did find that fathers who reported having better and clearer communication between the doctors and their wives in regards to the cancer prognosis were less likely to have signs of depression or grief. The researchers concluded that improved care and more support could help dying parents and their spouses deal with their fate.
Some limitations to the study included the lack of diversity and the inability for the researchers to assess depression and grief since the survey was conducted online and the answers were all self-reported. The participants were mainly white with income and education levels that were considered to be above average when compared to the income and education levels of the average widow.
The study was published in the journal, BMJ Supportive and Palliative Care.
Greater control: Compassion in Dying said too few people are planning for how they want to be treated at the end of their lives
A website which allows people to declare how they wish to be treated in the final weeks of their lives is set to launch this week.
Compassion in Dying, a charity that supports people to exercise their rights over end-of-life treatment, said MyDecisions.org.uk will give people greater control over their death.
The group said the website was created in response to fears not enough people were planning for how they want to be treated in the advanced stages of their life.
A statement on the MyDecisions.org.uk homepage reads: “You might not like to think about it but there might come a time when you’re too unwell to tell those caring for you – like your family or a doctor – what you do and don’t want to happen.”
Anyone visiting the site can fill out an “advance decision” where users can refuse any drugs or medical treatments that may be given to them at some time in the future.
The document, also known as a living will, is legally binding meaning any healthcare professional that ignores it risks going to court.
The website also allows people to make an “advance statement” to declare preferences, wishes and beliefs for those who might have to make choices for them should they lose the capacity to make their own decisions.
According to research commissioned by the charity, only 4 per cent of Britons made a record of their preferences last year.
We did a survey in 2013 which found that “90 percent of people say that talking with their loved ones about end-of-life care is important yet only 30 percent of people actually have done so.” Clearly, knowing the importance of a conversation or behavior doesn’t always mean we’ll do it. How many diets and half-marathon training programs have begun in this vein? We know all the excuses a person is likely to tell themselves to avoid the conversation. Any of these look familiar?
“I know my loved one well enough to make the right call.”
There are plenty of reasons to have the conversation with your loved one beyond your belief that you know what they would want. Having a specific conversation about they would prefer could bolster your confidence, strengthen their trust and reward you with a new sense of intimacy. The conversation could really surprise you. You might discover something about your loved one that you never expected.
“I don’t need to have the conversation. I’m healthy and young.”
The Conversation Project is an initiative to encourage people to have these conversations before they are sick or terminal. If you’re healthy and well, it’s the perfect time to have the conversation. As we say, it’s always too soon, until it’s too late.
“If my loved one wants to have a conversation, they can come to me.”
This excuse is extremely powerful. It allows you to believe you’re up for the conversation while simultaneously avoiding it.. Don’t fall victim to this one. Your loved one might be thinking the same thing, trapping you both in a game of chicken, in which neither of you have important conversations about your health, your finances and your future because you’re waiting for the other to initiate it.
“I’ll just decide based off what I would want.”
This excuse provides false comfort. No need to have the conversation because you know what you would do for yourself. Right? But this method of avoidance leads to an improbable and unrealistic scenario. Even if you are the designated health care proxy that doesn’t mean you’ll be the only one who cares about the outcome. You might find yourself having to explain your choices to other family members, friends and caretakers. This might open up a disagreement between family and loved ones who believe the person in question wouldn’t want that. And you’d be surprised how many decisions you might have to make. Imagine what happens when you need to make a decision and you don’t know what you would want.
“It makes me uncomfortable.”
The thought of having The Conversation can make a lot of people uncomfortable. Understandably. You do have the right to live your life with minimal discomfort, but consider this: we’ve heard from a lot of people who wished they’d had the conversation, rarely those who wished they hadn’t. Knowing what a loved one prefers can give you A LOT of comfort during a time when you most desperately need it.
“I don’t want to encourage my death by talking about it.”
We work with many diverse communities of various beliefs, cultures, and faiths. Each has their own history, experience and theological lens through which they view death. Our mission is to ensure that your fears aren’t holding you back from a very real and human experience.
“I don’t want to offend my loved one.”
Death doesn’t have to be an offensive topic, and if your loved one perceives it to be so, maybe you can start the conversation there. Ask them why they find death so offensive. A simple question can lead into a complex and profound conversation.
“I don’t need that kind of negativity in my life right now.”
Having the conversation doesn’t have to lead to a negative experience. Many people who had the conversation describe it as a positive, freeing experience rather than a negative one.
“I don’t even know what my career path will be let alone what I prefer about my end-of-life care.”
If you’re in your twenties or thirties, it can be particularly difficult to focus on your end-of-life care. You’re focusing on surviving the hardship of life post-college. We know the #TheStruggleIsReal. But while it’s hard to relinquish the coziness of childhood irresponsibility, you must. Get your affairs together: start that 401K, use sunscreen, stop eating take-out every night, and have the conversation with your loved ones.
“Why do we need to have a conversation? Can’t my loved one just write everything down?”
Modern medicine is helping individuals live longer than ever before, and with that extended time on earth comes increased medical complications and a lot more decisions to be made at the end-of-life. People will often say, ‘if I am ever like that – pull the plug,’ but there is often no proverbial plug to pull. Instead, there is a number of cascading decisions left for your loved ones to make. Talking through your values with your family can give them the guidance to navigate the health care options presented to them. Questions like: “What matters most to them at the end of life?” “Do they want to be at home or in the hospital?” “Do they mind visitors?” “Who do they want to make sure is there?” “Is there a book they might want read to them?” “Do they want music playing or a ball game on in the room?” These are the questions you might find yourself considering. Conversations are organic; they are interactive. This conversation isn’t just about answering a set of medical questions, but exploring all the avenues you didn’t think were possible.
So really, what are you waiting for? Check out our Conversation Starter Kit and have the conversation today.
A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.
Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.
“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.
Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.
Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.
“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”
So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.
An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.
Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.
Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”
Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.
Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.
Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.
Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”
For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.
“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”
Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”
In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.
“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.
Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.
Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.
“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.
A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.
Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.
Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.
Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.
“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.
Imagine you are sick, really sick. Actually, you are dying. Things feel out of your control. You are in pain, or extremely weak. Perhaps you feel too ill to enjoy the things you love to do. You want to know your options – you want to know what the rest of your life will look like, but you also want to have some control over your death. Ideally, you’d like to die with dignity.
On Monday, October 5, 2015, California became the fifth state in the nation to legally protect a patient’s right to have a physician assist him/her in dying. The End of Life Options Act, modelled closely after Oregon’s 1997 Death with Dignity Act (DWDA), allows California physicians to provide life-ending prescriptions to patients diagnosed with a terminal illness.
As a primary care physician, it’s important that I understand the details of this new law, and as we all are potential patients, it may also be of interest to you. I want to start with a few interesting facts I found in reviewing Oregon’s 16 years of experience.
1) The number of Oregonians using physician assisted suicide has increased steadily since 1998, though these deaths are still a very small percentage of Oregon deaths. In 1998, there were 16 patients who died with assistance; in 2013, there were 73. A total of 1,173 patients have received prescriptions, and 752 died with assistance.
2) Most Oregonians who use physician-assisted suicide are over age 65 (in 2013, the range was 42-96 years).
3) Most have cancer (65% in 2013, 80% in 2012). The second most common diagnosis is chronic lower respiratory disease (e.g. chronic bronchitis and emphysema).
3) 97% died at home.
4) 85% were enrolled in hospice care at the time of death.
5) The three most frequently mentioned end-of-life concerns are: loss of autonomy (93%), decreasing ability to participate in activities that made life enjoyable (88%), and loss of dignity (73%).
To whom does the CA law apply?
Per the new law, patients eligible to receive physician assistance must 1) be at least 18 years of age, 2) be residents of California, 3) be considered mentally competent, and 4) be diagnosed with a terminal illness and six months or less to live.
Patients must also be mentally and physically able to self-administer the aid-in-dying drug. Yes, each patient must be physically well enough to take the medication him/herself.
If a patient has a diagnosed “mental disorder”, the physician must refer him/her to a mental health specialist (psychologist or psychiatrist), who is responsible for determining the individual’s capacity to make medical decisions.
Which physicians can assist patients?
The process is legally mandated to be facilitated by a physician with “primary responsibility for the health care and treatment of an individual’s terminal disease”. This will include primary care physicians (i.e internists and family medicine physicians like myself) as well as specialists (e.g cancer doctors, heart doctors). In Oregon, by one measure, 64% of prescriptions were provided by primary care physicians.
How does an eligible patient actually get aid-in-dying?
First, a person who meets the above criteria must submit to their physician an oral request two times, at least 15 days apart. These requests must be done in person, face to face (not on email, telephone, etc) and documented by the physician. The physician must consult with patients in private to prevent coercion from family members.<
Second, a “consulting” physician must confirm the patient’s prognosis through a physical exam and review of medical record.
Third, the patient must submit a written request. The signed request must be witnessed by two people, who must attest the person (a) has capacity; (b) is acting voluntarily; (c) is not being coerced to make or sign the request. Only one witness can be related (blood, marriage, partnership, financial benefit), and only one can work at the healthcare facility where the person is getting treatment.
The patient must communicate with the physician to confirm 48 hours before taking the medications, and he/she must take the medications himself/herself.
The law will not take effect until 90 days after Congress adjourns the special session on healthcare.
My father’s recent death was not beautiful, and neither were any of the other deaths I’ve witnessed of late. This has left me wondering about a better path. Death is not easy, to be sure, but these were made particularly painful by medical interventions—or perhaps I witnessed the confusion between saving a life and prolonging the process of dying.
So I threw a party. Or rather, I held my first Death Café, and it turned out to be a lively, invigorating affair.
In Europe, there’s a tradition of gathering to discuss important subjects—a café philo, for a philosophical café, or café scientifique, a scientific café, and now there are café mortel, or death cafés. A death café isn’t an actual place; it’s a temporary event in various locations, such as my home, complete with decorations and, in my case, a cake with “DEATH: THE FINAL FRONTIER” scrawled on top.
My gathering was comprised of spunky friends, all in our middle years, all of us healthy. As it turns out, this is the segment of population that most seems to care about shaping the end of a life. A Pew Research Center study found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22 percent of them had written down wishes for medical treatment. The same study, though, found a sharp increase in all adults putting something in writing (six of 10 of us), which indicates that percentage-wise, it’s the slightly younger folks who are preparing now for their inevitable deaths.
This does not surprise me. For the last 14 years, I’ve been one of the 28 million Americans currently helping someone die. Baby Boomers and Gen Xers are caught in an unprecedented tide of caretaking both children and parents (not to mention ourselves and our own aging bodies); we are the first generation to be caught in this particular kind of caregiving-and-slow-death crisis. With medical intervention and technological wizardry, we’re forced to make decisions about procedures and medicines and ethics as never before. And we find ourselves without much guidance in a culture that’s conflicted and confused about dying.
Which is why we’re willing to talk. At my Death Café, I encouraged us not to focus on the deaths we’d witnessed in the past, but rather to speak of the deaths we want for ourselves in the future. Various results emerged. Half were afraid of the suffering that can precede death; half were afraid of death itself. Few of us had practiced death (“pretend this next breath is your last; what does that feel like?”), but all of us were convinced that doing so would only intensify and enlarge our lives.
The zeitgeist of this new movement is just now gaining momentum, but I can feel its strength and power. An unprecedented 66 percent of Americans now think there are instances in which doctors should allow a patient to die instead of doing everything possible to save that patient’s life. People would like to die—sometimes would like others to die—and this doesn’t make us morbid or crazy or unethical or mean. No. We are merciful and kind. We are as moral as we are mortal. We just want to know how to gracefully do what is going to happen anyway.
What lies ahead is unexplored territory, much like death itself, really. California recently passed “Death with Dignity” legislation, and the state representative in my hometown is reintroducing a similar bill in Colorado. Don’t get me wrong: I am all for funding research, finding cures and offering respite to caregivers. But it’s also our ethical duty to try for a chin-up, heart-steady end.
My father contracted pneumonia after 14 years of suffering with Alzheimer’s. He was given antibiotics and I was not in a legal position to object, but I’d have asked for comfort care only—not because I didn’t love him, but because I loved him enough to want him to have as natural and relaxed a death as possible.
Instead, I saw him grimace in pain and fear. I saw tubes and syringes and the sores on his body. I saw the family he’d worked so hard to create break apart under the pressure. I saw his blue eyes fade, and they taught me well: This could happen to you, too.
Death is perhaps the greatest mystery we face and the actual act of dying is the last physical act of our lives. We can strive to do it our way and to do it well. If anything deserves preparation, or some renewed clarity, death might be it. Which is why I suggest throwing a lively party.
Laura Pritchett is a contributor to Writers on the Range, an opinion service of High Country News (hcn.org). She lives in rural Colorado and her novel, Stars Go Blue, is based on her experience with her father.
