08/23/17

Hospice service helps care for geriatric pets

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Stacie Alves and Dr Julia Spade administer acupuncture and laser therapy to a dog with arthritis. Last Wishes has assisted more than 5,000 families with their pet’s care since November 2012. Earlier this year, the organization opened the first compassionate comfort care center for pets in Houston. The center features comfort rooms that are used for hospice and pain management consultations, therapeutic laser, acupuncture, and compassionate sedation-euthanasia.

By Vagney Bradley

People and their pets can build a strong bond together, and losing a pet can be difficult. When a pet becomes terminally ill, Last Wishes, Houston’s first pet hospice service, steps in to take care of a geriatric pet, from moment of diagnosis through death and aftercare.

Dr. Christie Cornelius is the owner and veterinarian of Last Wishes. She also co-owns Earthman Last Wishes, Texas’ first water-based cremation service for pets. Cornelius and her associate, Dr. Julia Spade, will become the first two veterinarians in the state of Texas to become certified in Veterinary Hospice and palliative care in October.

“I started imagining a better way to offer end of life services after a few years of general practice. I saw how difficult it was for pet owners to bring in their painful or otherwise ailing companions into an unfamiliar, sterile, noisy, scary environment for euthanasia,” Cornelius said.

“I started offering home services through a feline practice I was working for at the time and found it extremely rewarding to be able to provide a peaceful passing for a pet in their own environment, surrounded by loved ones. As the years went by, I convinced myself there was a real need and desire for this type of service in our community.”

In 2012, Cornelius branched out and started Last Wishes while working full time at another veterinary clinic.

Last Wishes has assisted more than 5,000 families with their pet’s care since November 2012. Earlier this year, the organization opened the first compassionate comfort care center for pets in Houston. The center features comfort rooms that are used for hospice and pain management consultations, therapeutic laser, acupuncture, and compassionate sedation-euthanasia.

Cornelius’ goal is to help educate the community about pet hospice, comfort care, pain management, and gentle water-based aftercare services for pets.

Dr Christie Cornelius and assistant Betty Rose Bryant perform an exam on a dog.

Some of the common conditions the organization works with includes, but are not limited to, cancer, heart disease, liver disease, osteoarthritis, organ failure, cardiovascular and neurological disease, and vestibular disease.

“Last Wishes is unique in that we want to make the most of the time that every pet has left with their family. Our doctors and staff don’t just focus on making euthanasia as comfortable as possible when it is ultimately needed,” Spade said. “Our expertise in multiple forms of hospice techniques allows us to consider what is truly beneficial for each case and help strengthen the bond between the pet and their family.”

The majority of services are done in the comfort of the family’s home and in the pet’s environment. Services at the center include consultations, acupuncture, laser, sedation-euthanasia, pet loss support groups, and aftercare. Last Wishes also provides pet loss support groups and continuing education.

“We have established a network of providers, such as our very own grief counselor, pet sitters, pet groomers, and volunteers set up to meet all of our patients and family’s needs when it comes to providing care for an ailing pet diagnosed with a terminal disease,” Cornelius said. “In addition, we sponsor twice monthly pet loss groups and host a private Facebook pet loss support page.”

Additionally, the organization assists disadvantaged families and individuals with their pet’s end of life care through the Last Wishes Fund, a non-profit organization funded by public donations.

Last Wishes provides provide a folder of pet loss/grief information for each family, a clay paw print memorial keepsake, and gentle transport of the pet for aftercare services from the client’s home.

“It is such an honor to be invited into the homes and lives of the families of Houston,” said Jennifer Rames, Last Wishes office manager. “While euthanasia is never easy, we feel honored to provide our services so that these precious furry family members can pass with dignity, in the place they feel safest and happiest, and surrounded by the people who love them the most.”

Cornelius and grief counselor, Marilyn Ladin, are developing a pet loss support program. The program offers in-person and online individual and group therapy.

“Our goal is to heal some long-broken hearts,” Cornelius said. “We also aspire to help other veterinarians and veterinary staff struggling with compassion fatigue, depression, and anxiety among other issues. Too many of our colleagues are causing their own deaths.”

This month Last Wishes plans to unveil of a public pet memorial gardens in Cypress. The garden will include four gardens and handmade stepping stones as a tribute to the pets the organization has helped. The memorial will also feature a special Rainbow Bridge. Families will have access to the garden on Sunday mornings as an opportunity to visit their pet in a peaceful and natural setting.

Complete Article HERE!

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08/19/17

To Treat or Not to Treat: What Would Your Loved Ones Want at the End of Life?

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Ensuring that the care you get reflects your wishes and values

When someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.

Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.

If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?

To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below. 

Q: What’s the first thing families should consider?

A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:

  • What are they expecting and hoping from treatment?
  • What are the trade-offs of treating versus not treating?
  • What risks are acceptable and not acceptable to them?
  • Which do they value more: quality of life or quantity of days?

Depending on their age, situation and views, answers will vary.

One paralyzed patient may be happy sitting with family and watching TV. Another may not.

One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.

We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.   

Q: What’s the best way to start the conversation?

A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.

When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.

Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.

These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.

(And remember to tell loved ones about your wishes and values, too.)

Q: Do larger issues get in the way of these discussions?

A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.

I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.

But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.

Q: What questions should you ask about end-of-life care?

A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.

If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.

Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.

These conversations and advance directives show us how to proceed and help us allow patients to die with dignity.

Q: Are there proven benefits to end-of-life planning?

A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.

Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.

Q: Any final word for families?

A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.

Complete Article HERE!

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08/17/17

Medical Aid in Dying: What My Dog Taught Me

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by

He was sick, but it wasn’t like he was going to die anytime soon. A year ago, my dog Sierra sustained a neurological insult that left him delirious, unable to walk straight and almost entirely blind and deaf. Still, he enjoyed our loving touch, snuggling against my thigh as I watched a movie or falling asleep in my arms while being held. I struggled with these thoughts as the vet pushed the pink, fluid-filled syringe into his vein. He collapsed into my arms and let out a groan, as he had many times before. But this time, he did not get up.

I said goodbye and left him to join my parents standing in the waiting room. My father looked up at me, “Is it done?” I nodded, and suddenly, we all broke into tears. We embraced each other and talked about what a good dog he was. We told each other it was the right thing to do, that it was time. But was it? Why now?

I couldn’t help but think we were being selfish. Objectively, nothing much had changed since his suspected stroke, albeit he was undoubtedly more of a burden. We were constantly cleaning up after him, redirecting him when he got caught in a corner and paying for vet visits and medications. But the bottom line was that he still found enjoyment in life. Was the choice to put him down for our wellbeing or for his?

Health professionals and loved ones struggle with these same questions when caring for those nearing the end of life. Sierra’s decline came at a poignant time, one in which many are fighting for the right to choose death in the face of terminal illness or suffering. Currently, five states allow those with a terminal illness and a prognosis of less than six months to end their life with the help of a physician, also known as “medical aid in dying.” Canada legalized physician-assisted death in 2016, joining a small number of countries that have laws enabling this practice.

The principle behind these laws is relatively simple. People want to die with dignity, and in the process of fighting for the right to do so, they’ve ironically improved end-of-life care. As a free nation that claims to be a leader in health care, why have we not adopted this practice? While poking fun at “the land of the free,” Jim Jeffries, an Australian comedian known for his outsider political commentary, pointed out that “assisted suicide for the sick … is the biggest freedom of them all.”

Opposition to physician-assisted death comes from both the public and from within the medical profession itself. Deeply rooted societal ideals, values and norms fuel the debate. From day one, physicians take an oath to “do no harm.” Common sense tells us that healthcare professionals are supposed to help heal the sick, not to “help” them die. Furthermore, for some patients, taking one’s life goes against their religious values and/or our fundamental values as human beings. Also, many families find that loved ones nearing the end of life are often incapable of making well informed decisions due to fear, depression or the effects of disease on their mind. And so we choose life, even when death seems so near.

Despite the moral controversy, attempts have been made at giving patients the right to take control of their own death in the United States. Numerous court cases have brought the legality of this practice into light culminating in the 2006 Supreme Court case Gonzales v. Oregon. Under this ruling, the federal government failed to prohibit physicians in Oregon from prescribing drugs to help patients die, opening the door for states to legalize medical aid in dying. Organizations such as the Death with Dignity National Center have taken it upon themselves to both educate the public on end-of-life options and to advocate for physician-assisted death. Even so, there has been little done to legalize this practice in federal law.

Lawmakers took a step in the right direction during discussions about health care reform and the implementation of the Affordable Care Act (ACA). The misleadingly-termed “death panels” were a way to incentivize physicians to have discussions about end-of-life care with their patients. Unfortunately, this section of the ACA was thrown out due to political controversy. Finally, in 2015, the Centers for Medicare and Medicaid services approved regulations that allow qualified healthcare professionals to be reimbursed for providing advance care planning to patients. Still, moral and legal barriers persist, preventing patients from making the decision that is right for them.

Looking back, I am grateful that Sierra left us when he did. Choosing to put him down was not easy, but afterwards, I came to an important realization. By choosing death at that moment, we determined when, where and how he died. We chose a period when our family was home together so that we could spend quality time with each other in his last moments. This pronounced the end of our living relationship, giving us a sense of completion. We made sure that he died with us, in a peaceful environment, around those he loved instead of alone on the kitchen floor. He was able to leave the world peacefully and quietly without the suffering of a drawn out painful death that would taint our memory of his long and happy life. Sometimes, I wonder if the groan he let out at the end was a sigh of relief, a goodbye or even a thank you.

Complete Article HERE!

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08/15/17

How to Find Meaning in the Face of Death

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By Emily Esfahani Smith

The psychiatrist William Breitbart lives at the edge of life and death. As chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center in New York, Breitbart specializes in end-of-life care for terminally ill cancer patients. For many of his patients, the most pressing question isn’t when they’ll die or how painful death will be. Rather, it’s what makes life meaningful. They are in search of a meaning that cannot be destroyed by death.

Breitbart has spent the better part of his career trying to answer that question. His ground-breaking research shows that while the specter of death often leads people to conclude that their lives are meaningless, it can also be a catalyst for them to work out, as they never have before, the meaning of their lives.

When people believe their lives are meaningful, according to psychologists, it’s because three conditions have been satisfied: They feel their existence is valued by others; they are driven by a sense of purpose, or important life goals; and they understand their lives as coherent and integrated. Psychologists and philosophers say that the path to meaning lies in connecting and contributing to something that is bigger than the self, like family, country, or God.

Breitbart’s interest in meaning took root in his childhood. Born in 1951, Breitbart grew up on the Lower East Side of Manhattan. His parents, Jews from eastern Poland, narrowly avoided Hitler’s death camps. When they moved to America, they carried their memories of the war years with them. Breitbart’s childhood was steeped in that tragic past. Every morning, his mother would ask him at the breakfast table, “Why am I here?” Why, she wondered, did she live when so many others had died?

“I grew up with a sense of responsibility to justify my parents’ survival and to create something in the world that would be significant enough to make my life worthwhile. It’s no coincidence,” he laughed, “that I ended up at Sloan Kettering.”

Breitbart began working at the hospital in 1984 during the height of the AIDS epidemic. Young men his age were dying all around him. As he tended to them, “They were constantly asking me to help them die,” he said. He was also working with terminal cancer patients. “When I walked in the room, they would say, ‘I only have three months to live. If that’s all I have, I see no value or purpose to living.’” They told him, “If you want to help me, kill me.”

If death means non-existence, Breitbart’s patients reasoned, then what meaning could life possibly have? And if life has no meaning, there’s no point of suffering through cancer.

By the ’90s, physician-assisted suicide was a hot topic in Breitbart’s circles and beyond. The doctor Jack Kevorkian had helped his first patient end her life in 1990. As the United States debated the ethics of assisted suicide, other countries were taking steps toward normalizing the practice. In 2000, the Netherlands became the first nation to make physician-assisted suicide legal. Today the practice is legal in the United States in California, Vermont, Montana, Washington, and Oregon.

As Breitbart heard more stories of assisted suicide, he began to wonder what specifically was driving the terminally ill to give up on life. At the time, he was doing research studies on pain and fatigue at the end of life, so he tacked onto those studies some questions that asked his subjects whether they felt a desire for a hastened death. What he discovered surprised him.

They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life.

The assumption had been that the ill chose to end their lives because they were in terrible pain. But Breitbart and his colleagues found that wasn’t always the case. Instead, those who desired a hastened death reported feelings of meaninglessness, depression, and hopelessness. When Breitbart asked patients why they wanted a prescription for assisted suicide, many said it was because they had lost meaning in life. Unlike clinical depression, which has a specific set of diagnosable symptoms, meaninglessness was more of an “existential concern,” Breitbart said—a belief that one’s life has little value or purpose and is, therefore, not worth living.

Breitbart knew he could treat depression—there were medicines and well-developed psychotherapies for that—but he was stumped when it came to treating meaninglessness. Then, in 1995, he began to see a way forward. He was invited to join the Project on Death in America, which aimed to improve the experience of dying. Breitbart and his colleagues on the project—including philosophers, a monk, and other physicians—had long conversations about death and the meaning of life, “peppered with references to people like Nietzsche and Kierkegaard and Schopenhauer,” Breitbart said. “What I suddenly discovered,” he explained, was that “the search for meaning, the need to create meaning, the ability to experience meaning was a basic motivating force of human behavior. We were not taught this stuff at medical school!”

Breitbart became convinced that if he could help patients build meaning, he could decrease their suicidal thoughts and make their lives worth living even to the very end.

He developed an eight-session group therapy program where six to eight cancer patients come together in a counseling workshop. Each session, in one way or another, helps build meaning. In the first session, for example, the patients are asked to reflect on “one or two experiences or moments when life has felt particularly meaningful to you.” In the second session, patients respond to the question “Who am I?” to tap into the identities that give them the most meaning. One woman responded saying, “I’m somebody who can be very private … [and] have been working on accepting love and affection and other gifts from other people.” In subsequent sessions, they share their life story with the group and think about the role that love, beauty, and humor played in their lives.

In the final session, the patients reflect on the part of them that will go on living even after they are dead—their legacy. That could be their soul, or it could be something they helped to create that will continue to exist—their children, a work of art, or an organization. They present a “legacy project” to the group, generally something they do or create that represents how they want to be remembered. One man brought in a woodcut of a heart sculpted into a Celtic Trinity. “This is what I will teach my children,” he said, “that there is eternal love, and that I will be there for them, far beyond my passing.”

Breitbart performed three randomized, controlled experiments on the meaning-centered psychotherapy. When he analyzed the results with his colleagues, Breitbart saw the therapy had been transformative. By the end of the eight sessions, the patients’ attitudes toward life and death had changed. They were less hopeless and anxious about the prospect of death than they were before they began the program. They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life. And, of course, they found life to be more meaningful. These effects not only persisted over time—they actually got stronger. When Breitbart followed up with one group of patients two months later, he found that their reports of meaning and spiritual wellbeing had increased, while their feelings of anxiety, hopelessness, and desire for death had decreased.

The time between diagnosis and death, Breitbart has found, presents an opportunity for “extraordinary growth.” One woman, for example, was initially devastated by her diagnosis of colon cancer—but after enrolling in the therapy program, she realized, “I didn’t have to work so hard to find the meaning of life. It was being handed to me everywhere I looked.” And that realization ultimately brought her—and Breitbart’s other patients—some measure of peace and consolation as they faced life’s final challenge.

Complete Article HERE!

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08/12/17

Tidy transition can ease caring for dying parent

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By Glenn Ellis

There are two things that movies consistently get wrong: sex and death. Unfortunately, as a society, we spend far too much thinking of sex, and too little time devoted to death – especially of a parent.

Caring for a dying parent is a difficult and emotionally challenging task. However, effective communication can ease the transition.

Movies consistently present death in a false or unrealistic way. Real-life death is not always dignified, simple or tidy. Indeed, death can be upsetting, messy, painful and traumatic experience for all parties involved.

Complications can arise during the course of an illness can lead to increasingly worsening circumstances. Immobile or semi-mobile patients may feel determined to walk and my try to get out of bed. As a result, some may fracture or break their hip. As bad as terminal illness is, additional complications can make quality of life worse. Patients may become restricted to their bed and may rely on a catheter.

Regardless of the attempts to prevent it, as soon as they return home, complications such as a yeast infection or urinary tract infection may occur. This causes a patient to become even more frightened and restless. How is anyone supposed to take care of a dying person? It’s a fairly straightforward to concept “nurse” a person back into good health, but how is anyone supposed to “nurse” them into death with dignity and compassion?

Then there’s the morphine. Dying parents may often feel agitated and restless, so much so that they might try getting out of her bed. The morphine may help to calm them down. Is it unethical to give it to them to address mental rather than physical pain? Although her hip fracture causes pain. Many children give their parents morphine more for their parents restlessness.

The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.

These are the kinds of issues that children with dying parents struggle with every day. Many adult-children caregivers believe that their ill parent wouldn’t have wanted to live this kind of existence. They may have stated that they didn’t want a lingering, drawn-out death. This is why advance directives are so essential.

If you’re like most families (including mine), generally, the care of a dying parent falls on the shoulders (and back) of one sibling or family member. Although it’s rare for siblings to share parent care equally, it’s a family responsibility. Not treating it as such “will haunt you” later on. Even if you live far away from your ailing parent, you can still help out.

From ordering car service a couple times a week to paying bills online, anything that can be done via telephone or internet is within your reach, she notes. Just calling your mom more often “so she’s not so needy” can provide relief to the sibling carrying the heaviest load, says Russo, as can making the trip to be with your mom whenever possible, so your sibling can take time off.

End-of-life care is something that few people like to think about, let alone discuss. Avoiding the subject until it’s unavoidable, however, can be a “huge mistake” with devastating consequences for the sibling relationship. Call a family meeting when your parents are still healthy.

Such a conversation might start this way: Remember aunt so-and-so, and how our cousins were still fighting when she was on the respirator and they wouldn’t let her die and how painful that was for everybody?

We don’t want that to happen in our family.

Mom, Dad, do you have a living will? Have you assigned somebody to be the healthcare proxy? Though they may attempt to deflect such questions: nudge further. If you were on a respirator or in really bad shape, would you want us to do everything possible, or would you just want to go quietly? Who should make that decision? We’ll all want to do what’s right, but we may have different feelings.

It’s time to start an honest and open discussion of what dying really means. How can we help someone we love to pass on? What do “extraordinary measures” mean to different people? To some, it may mean CPR. For others, it might mean giving any medications that can help. Furthermore, what constitutes a tolerable living standard? For instance, what happens when someone is bedridden or unable to control their bowels?

There are few things more difficult than saying goodbye to a dying parent. These questions are undoubtedly tough ones. In most cases, they’re mentioned far too late.

Complete Article HERE!

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08/11/17

Nearly 1 In 5 Hospice Patients Discharged While Still Alive

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Hospice care is for the dying. It helps patients manage pain so they can focus on spending their remaining time with loved ones. But in recent years, nearly one in five patients have been discharged from hospice before they die, according to government reports.

A study published last month in the journal Health Affairs finds that hospices with the highest rate of so-called “live discharges” also have the highest profits. The lead author is Rachel Dolin, a David A. Winston fellow researching health policy. Her paper found an association between high live discharge rates and high profit margins, but it didn’t determine the cause.

“It’s important to continue to study this area to get a better sense as to whether profits are driving the decision to discharge patients from hospice, rather than patient preferences and needs,” says Dolin.

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

“It was decided that I was not dying fast enough,” he told Arizona Public Media in 2015. “And so, to put it most succinctly, I flunked the hospice program.”

Nelson died a few months after giving that interview, but his situation isn’t all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It’s important to understand, though, that when patients are discharged from hospice, they don’t necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

Medicare pays the bills for the vast majority of patients receiving hospice care, at a cost to the government of at least $15 billion a year. Federal regulators have questioned whether high rates of live discharge mean that hospices are making money by admitting patients who aren’t actually dying.

But these decisions aren’t that clear cut, says Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “We see more and more patients that have conditions like Alzheimer’s disease or Parkinson’s disease that don’t always follow a predictable course,” says Rotella.

Some who study aging are concerned that certain hospices are gaming the system. That’s a worry of Susan Enguidanos, an associate professor in the Leonard Davis School of Gerontology at the University of Southern California. For example, she says that some hospices may be trying to avoid paying for costly treatments by discharging patients temporarily when they need to go to the hospital.

“Individuals that are going in for these very brief health issues are coming out and then, they’re being readmitted to those [same] hospices,” says Enguidanos.

That’s not a good reason to discharge someone, says John Keyserling, senior vice president for communications and policy at the National Hospice and Palliative Care Organization, the trade association for hospice providers.

“Any association between profit margins and clinical decision making is inappropriate and not something that the hospice community supports,” Keyserling says.

That hospice community has nearly doubled in size since 2000. Susan Enguidanos says it’s also changed a lot.

“Hospice organizations started as grass root efforts and were largely non-profit for a long time,” she says. “Now we’ve had a huge increase in for-profit hospices.” There’s a concern, says Enguidanos, that by discharging patients early, some hospices may be “trying to avoid costs that they should be responsible for.”

Whatever the short-comings of some hospices may be, Keyserling says that his biggest worry is that people who could be helped by hospice aren’t taking advantage of it in time. He says about half of patients die within 17 days of being admitted. And that turns hospice into “crisis care” instead of the comfort care it’s intended to be.

Complete Article HERE!

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08/10/17

Life lessons from dying people

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In summer fellowship, students pursuing health careers learn directly from the terminally ill

Skidmore College student Elisa Smith of MA, left, Union College student Matt Liquori of CT, center, and Colgate College student Yohary Fabian of Colonie with a practice mannequin at the Joan Nicole Prince Home

Matthew Liquori is spending his summer with dying people, and he knows what you’re thinking.

“Friends and family, when they hear, the first thing they say is, ‘Wow, that’s so depressing,'” he said. “But it’s really not.”

Far from it, the 21-year-old insists.

As part of a summer fellowship run by Union College, the incoming senior is spending eight weeks volunteering at the Joan Nicole Prince Home, a home where people with three months or fewer to live come to die in peace.

His program director calls it a crash course in death and dying — that human condition that strikes fear into the hearts of many but that future doctors, nurses and social workers will have to face head-on eventually. So why not face it sooner rather than later?

That’s how Liquori, a pre-med major at Union, recently found himself cooking chicken gizzards for a dying man and having one of his best days ever.

Rememberance board at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

It was the man’s first day at the home, and the student volunteers wanted to know what he liked so they could go shopping and fill the cupboards with food he might eat. But the 51-year-old — a gaunt, depressed man on the losing end of a nearly three-year battle with rectal cancer — had no appetite and little success when he did try to eat.

“It’s a tough transition and I think he was overwhelmed and not really willing to open up to us,” Liquori recalled. “So eventually we were like, what’s your favorite food in the world? And he responded, ‘It’s this Greek gizzard soup my mom and grandmother used to make growing up that we’d always have before our big Easter feast.'”

When the students went out and came back with the ingredients for the soup, the man suddenly grew animated. He walked them through how to make his passed-down family recipe, took selfies with the students and called his mom to let her know what was happening. By the time it was ready, he was so excited he was shaking, Liquori recalled.

“It was an awesome welcome for him because right away he was like, ‘It’s gonna be OK here,'” he said. “And that was really cool. It’s days like that that aren’t depressing because you go home and you feel great, and you’re like, that was a great day.”

The Joan Nicole Prince Home is a unique operation. Only two people at a time are allowed to live at the house, a handsome little cape at the end of a quiet cul-de-sac in Scotia. That’s on purpose — any more and the home would have to be run like a medical facility, with all its rules, regulations, poking and prodding.

That’s exactly what its residents are trying to avoid, and what its founders had in mind when the home was built in 2006.

Living room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

Residents know they’re dying. Their doctors know they’re dying. By the time they arrive at the home, they’ve usually tried all the treatments, cures, medication regimens and so forth. Their time is up and they know it, and they just want to die in peace.

That’s hard to do in the cold and sterile atmosphere of a hospital, or at home where a loved one may not have the mental, physical or financial wherewithal to keep them comfortable. At the Joan Nicole Prince Home and other comfort-care residences, hospice workers visit to administer medical care and volunteers handle everything else — the cooking, cleaning, bathing, help going to the bathroom, or getting in and out of bed.

The psychological relief it provided Liquori’s patient, who wished to remain anonymous due to privacy concerns, and his wife was enormous.

“I can finally relax, you know? And my wife can finally breathe,” he said Thursday, puffing a cigarette on the home’s back porch. “She doesn’t have to walk in and go did you take this medicine? Did you take that medicine? Did you take this? Do I need to change your bandages? Do I need to change your colostomy? All that stuff. We can actually be husband and wife instead of patient and caregiver.”

Volunteers are needed 24/7, and three years ago board member Carol Weisse realized she had the ideal pool of candidates: wannabe doctors, psychologists and social workers.

Weisse teaches behavioral neuroscience, death and dying, health psychology and other courses at Union College in Schenectady. Hoping to marry the home’s need for volunteers and her students’ need for hands-on experience and research, she applied for a grant and launched the Community Action, Research and Education (CARE) Summer Fellowship Program, open to students from six liberal arts colleges across the state.

Students in the program volunteer 24 to 30 hours a week for eight weeks, gaining bedside experience and completing online coursework on death, dying and palliative care along the way. They also conduct research — last year students researched the changing nutritional needs of people in the final stages of life and turned it into an educational brochure for family members visiting the home to consult.

“Health care is very focused on cure — I’m going to cure this, I’m going to treat that, I’m going to give you medicine for this,” Weisse said. “But this experience forces students to step back and realize, there isn’t always a cure, but that doesn’t mean there’s nothing we can offer to alleviate your pain, your suffering. There is healing that happens at the end of life, and being present, being comforting and attentive is a form of medicine and it does provide healing.”

Liquori and the other student volunteers feel they’ve gained more invaluable insight into human health, psychology and empathy than they ever could have gained in the classroom.

Meditation room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

Said Yohary Fabian, a 21-year-old pre-med student at Colgate University: “I want to be a doctor, and sometimes people die and you can’t save them. Sometimes there’s a disease and the knowledge for a cure just isn’t there yet. People suffer every day and we have to learn how to cope with it.”

Elisa Smith, a social work major at Skidmore College, found value in the art of silence — learning to be quiet and attentive, and not shying away from uncomfortable conversations.

“One of the hardest things has been listening to the residents talk about their fear of what’s to come,” she said. “But I found it was really helpful to (a resident) when I would sit out on the porch with him and just listen when he tried to talk about the things he was feeling. And I would say it’s one of the most life-affirming experiences I’ve ever had.”

Weisse’s dream is to one day grow the fellowship, which relies on grant funding, beyond the three homes it currently helps in the Capital Region. In addition to the Joan Nicole Prince Home, fellowship participants have volunteered at Mary’s Haven in Saratoga Springs and Gateway House of Peace in Ballston Spa. There are 30 such homes across upstate New York.

“We’re not going to learn how to be comfortable around death without practice,” she said. “And because health care and death have been so institutionalized over the years, we don’t really have a lot of practice anymore. This is sort of changing that culture.”

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