Study finds room for improvement when hospital patients transition to hospice care

by Steve Lundeberg

Terminally ill patients referred to hospice care from a hospital setting tend to be on hospice for shorter periods than those who enter hospice while living at home or in a residential care facility.

The findings by Oregon State University College of Pharmacy researchers are an important step toward improving the care experiences of dying patients and their loved ones.

Hospice care refers to treatments whose goal is to maximize comfort and as opposed to prolonging life. In general, more time on is better for patients than less time, research has shown.

“It’s well established that hospice care reduces symptom burden and improves quality of life for patients nearing the end of life and for their caregivers,” said the study’s lead author, Jon Furuno, an associate professor and the interim chair of the Department of Pharmacy Practice. “Patients receiving hospice care also have their discomfort controlled better and experience more satisfaction with their care compared to patients who die without receiving hospice care.”

But Furuno’s recent research, published in the journal Medical Care, points out some key variations in hospice transitions and experiences, opening the door to changes that could make important, positive differences for patients and families.

Patients can be referred to hospice care from any location, Furuno explains, but little is known about differences between referrals from different care settings; i.e. hospitals, nursing homes, assisted living facilities or the someone’s .

“Are the patients enrolling in hospice at an appropriate time or later than ideal? Are they making the transition to hospice care with the right prescriptions from their providers? How do things differ among referral locations? Those are all key questions to explore to help ensure optimal patient care,” Furuno said.

The study looked at data from nearly 80,000 adult hospice patients from 19 states over a five-year period. Their average age was 79, and one-third were receiving hospice care because of a terminal cancer diagnosis.

Just over half of the decedents had been referred to hospice from a , and about one in five had been living at home at the time of their referral. Nursing homes (17%) and assisted living facilities (9%) rounded out the sample.

The results showed that hospital-referred patients were much less likely to receive hospice care before the final seven days of their life than patients referred from elsewhere; 56% of those referred from a hospital spent less than a week on hospice, compared to 30% from nursing homes, 29% from their own home, and 19% from assisted living.

“Obviously every case is unique, but generally speaking, more time in hospice care is associated with better patient and family outcomes,” Furuno said. “In our study, the median length of time on hospice was nine days.”

Another key finding involved drug prescriptions, particularly the absence or presence of a constipation-alleviating drug along with the opioids often used during hospice care. Opioids relieve pain but can cause other discomfort in the form of infrequent bowel movements.

“Hospital-referred patients had the lowest frequency of co-prescribed opioids and a bowel regimen,” Furuno said, noting co-prescription of these medications is an important indicator in the Centers for Medicare and Medicaid Services’ Hospice Quality Reporting Program.

Among hospital-referred hospice patients, fewer than 60% received that co-prescription compared to 72% of patients referred from nursing homes, nearly 70% from assisted living facilities and 63% from home.

“The study’s results suggest an opportunity for interventions that will improve the transition to hospice care and benefit patients and families,” Furuno said. “Patients transitioning from the hospital to may be the most vulnerable group because of the magnitude of the transition from actively fighting a chronic illness for months or maybe years to palliative care.”

Also, health care providers in a hospital setting may not always be sufficiently trained in preparing patients and families to make that transition, he said, adding that further research should look for explanations behind the hospice transition differences uncovered by this study.

“The end goal is policies and practices that consider these differences and trigger specialized interventions when necessary so patients can get the best care possible,” Furuno said.

Complete Article HERE!

The big difference between palliative care and hospice care

By Gareth Mahon

The difference between palliative care and hospice care

Hospice care, on the other hand, is more specific; it is a synonym for end-of-life care. In order to receive hospice care, you’ll have to stop curative treatments.

Unlike palliative care, hospice care is short term; it begins only after a medical assessment indicates you have six months or fewer left to live. Palliative care, however, can and should begin at any stage of a life-limiting illness.

How to create an end of life care plan

If you are receiving palliative care for a terminal illness, then it’s important to create an end of life care plan that describes the kind of care you want. To create your plan, consider these questions:

  • Where do you want to be for this stage of life? You can receive palliative care at home, in hospital, in a hospice, or in an aged care facility. The best location for you will depend on your needs, what type of care you want, what equipment and support is needed, and your goals.
  • Who do you want to provide care? Do you want your GP to provide most of your care? Do you have specialist health professionals such as an oncologist or physiotherapist? Do you want to receive care from a palliative care team that includes a social worker, a psychologist, or other specialists?
  • Who do you want to make decisions if you’re not able to? You can designate a loved one to make decisions about your care on your behalf if that becomes necessary.

Benefits of palliative care

Palliative care can significantly improve your quality of life. Even if you’re receiving it as part of end-of-life care, palliative care helps you focus on the life you’re experiencing now. The goal of palliative care is to make your life now as full and comfortable as possible.

One of the key goals of palliative care is to reduce the physical symptoms of your disease. This treatment focuses on alleviating symptoms such as pain, nausea and fatigue. Reducing your symptoms can reduce the suffering caused by disease, making you more comfortable and enabling you to enjoy activities and time with your loved ones.

Palliative care also provides spiritual and social support. This could mean providing you with counseling and care from a clergy member of your religion. It could also mean grief counseling and therapy for your and your loved ones, or care from a social worker who provides you with resources and counseling. In addition to religious support, you can receive care such as narrative therapy, counseling and education.

Finally, palliative care offers holistic support for your family and loved ones. It includes both physical and psychological support. Care for your family could include grief counseling and connection with community resources.

How do I get palliative care?

You qualify for palliative care if you have a serious, incurable illness. It does not have to be a life-threatening illness, but it does have to be an illness that significantly limits your quality of life for you to be eligible for palliative care.

To receive care, you simply need a referral from a healthcare provider. Usually this is your GP, but it can be a specialist for your illness or any healthcare professional who knows about your condition and can recommend care. If you think you may be eligible, you can ask your doctor to refer you.

Most palliative care is covered by Medicare at no cost to you. However, you might have to pay fees for some services. If you choose to receive care at home, then you might need to pay for specialized equipment or nursing staff. Some complementary palliative treatments or therapies may only be available by paying for them privately. If you choose to go to a private hospital or to use a respite service, these may also come with associated fees.

Complete Article HERE!

Unpredictability of advanced heart failure complicates end-of-life care, doctors say

Some people with advanced heart failure live for a long time, while others don’t. That uncertain timeline poses challenges for doctors, their patients and families dealing with end-of-life care.

“We’ve had for cancer for many years, which have been used to make sure that end-of-life patients get high-quality care,” said Dr. Rebecca Hutchinson, a hospice and palliative medicine specialist at Maine Medical Center in Portland. “With , we don’t have those indicators.”

That discrepancy motivated Hutchinson and five colleagues to conduct in-depth interviews with 23 cardiologists and across Maine about treating people with advanced failure.

The study, published Monday in the Journal of the American Heart Association, found “prognostic uncertainty” of advanced heart failure complicates how doctors care for patients for several reasons.

“Heart failure is marked by frequent exacerbations where patients can get pretty sick and then recover back to baseline or pretty close back to baseline,” said Hutchinson, who led the study. “At some point, one of those exacerbations usually marks the beginning of end of life, but it’s not always easy to tell. Are you in one that’s close to end of life or are you in one where there’s going to be a recovery?”

That, she said, forces doctors to balance the desire to prolong life against the possibility that more treatment will do no good and cause unnecessary suffering. The uncertainty often makes it harder for patients to recognize the reality of their disease, and harder for doctors to discuss the situation with them, the study found.

“Doctors told us that patients with heart failure frequently don’t realize that this is a terminal disease,” she said. “That makes it harder to have the end-of-life conversations early to make sure we’re giving them care that’s consistent with their values.”

According to American Heart Association statistics, an estimated 6.2 million U.S. adults have heart failure, where the heart cannot pump enough blood to meet the body’s needs. About one-tenth of those are classified as advanced heart failure, where usual treatment is not effective but the remaining life span is hard to predict.

The study also examined differences in urban and rural areas, where patients may have less access to medical specialists and quality in-.

“That’s good and bad,” Hutchinson said. “Patients in tend to have less aggressive (unnecessary) interventions at the end of life, but it’s bad in that they may not have access to life-prolonging therapies.”

Hutchinson said the findings emphasize the need for better methods to calculate a patient’s prognosis and determine a patient’s values so that end-of-life care matches what the patient wants. Regardless, she said, —medical help to relieve the symptoms and stress of a serious illness—should be part of the plan.

“Palliative care really shouldn’t be tied to a prognosis,” Hutchinson said. “A lot of people associate palliative care with end-of-life care and hospice, but it’s really not.”

That point alone makes the study worthwhile, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

While people choosing hospice must agree to relinquish insurance coverage for life-prolonging treatment, she said, “palliative care has no such restrictions. You can get it whether or not your disease can be cured, whether you’re going to live with it for 20 years or whether it’s progressive. Eligibility for palliative care is based on need—symptom distress, family exhaustion, uncertainty about what to expect—and not on prognosis.”

Meier, who was not involved with the new study, said changing the mindset is particularly important for heart patients, who may have years to live but face issues such as depression, anxiety and social withdrawal. She said all of that can be helped by palliative care, which research shows can improve quality of life and symptom control in people with heart failure.

“The important take-home message is we offer both life-prolonging treatment and palliative treatments meant to improve quality of life and day-to-day functioning—at the same time,” she said. “We need to replace our either/or mindset with a both/and model.”

Complete Article HERE!

5 Ways To Make Your Dog’s Last Days Their Best Days – DogTime

By Maggie Clancy

Grieving over the loss of a pet is traumatic. But sometimes, it can be even harder when we know that our dogs don’t have much time left. Anticipatory grief is real, and it’s a completely normal emotion to feel.

Dogs are very intuitive, and your grief may be contagious to your ailing pet. Perhaps instead of spending your remaining time with your canine companion in a state of grieving and sadness, you can make the rest of your dog’s life as comfortable and wonderful as possible.

Here are some tips on how to make your dog’s last days the best that they possibly can be.

Create A Bucket List

Dog parent Riina Cooke made the decision to make a bucket list for her terminally ill Boxer, and it helped her with the grieving process tremendously. From a cheeseburger to a pedicure, she filled her dog’s remaining time with fun and happiness.

What makes your dog ecstatic? Is it taking luxurious car rides? Hanging out with some of their favorite friends?

Create a list of what your dog loves to do best, and cross off as many as you can as long as your dog’s health and safety permits.

There’s nothing better than seeing your pup at their happiest, and there’s no better way to remember them than in that state, as well.

Go All Out With The Food

If your dog’s vet agrees that certain people foods are okay for your dog to ingest, give your pup the tastiest, most decadent food possible.

When my childhood dog, a nine-year-old Cocker Spaniel, was suffering from a myriad of ailments, we gave her steamed rice and steak every night for dinner. Some nights, her dinner was fancier than what the humans of the household were eating.

Ask your vet which foods are appropriate, and start making Fido gourmet meals.

Indulge In All Forms Of Pampering

Go buck wild with any and all forms of pampering, especially anything that will relax and soothe your dog.

Have a dog masseuse come to your house. Go to a dog bakery and get them the most outrageous dog cake you can find.

You can even go a little less traditional route and do things like take your dog to a pet communicator or psychic to hear what they’re really feeling. You may not be a believer, but it will probably be a fun experience and a fond memory.

Get Educated On Pain Management

This may not be the most fun part of the list, but it’s crucial. If your dog is suffering, it may not always be apparent that he or she is in pain. Educate yourself on the signs of pain in dogs.

If your dog hits a point of extreme pain or a point where you cannot take care of your pup yourself, it may be time to consider dog hospice care. Much like human hospice care, dog hospice care is from the comfort of your own home.

You can work with your vet on things like administering medications and deciding if and when it’s the right time for euthanasia.

Allow Your Friends And Family To Help You

In order for you to be in the right state of mind for when your dog is nearing the end of their life, you should have a solid support group. Talk to friends who know your dog well, family, and a veterinarian you can trust.

Many animal hospitals also offer support groups. By having this ring of support for yourself, you will be able to effectively and lovingly support your pooch through this painful time.

Letting go of a dog is never easy, but you can make it as positive of an experience as possible for both you and your dog.

If you’ve gone through the grieving process of a dog passing away, what did you do to make your dog’s last days their best? Do any fond memories bring you comfort? Let us know in the comments below!

Complete Article HERE!

Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

Complete Article HERE!

I’m an oncologist with terminal cancer, and I support medical aid in dying.

Here’s why.

As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.

By Dr. Tom R. Fitch

Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.

The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.

“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.

With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.

I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.

Patients must understand their options

Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.

I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.

I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.

Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.

Patients near the end of their life also should have access to medical aid in dying (MAID).

What medical aid in dying laws do

I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.

Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”

MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.

We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.

MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.

This is patient-centered care

Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.

One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.

They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.

None of this is true for people who die by suicide.

Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.

Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.

It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.

This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.

As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.

I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.

Complete Article HERE!

How Dying Taught Me to Live

By Brad Dell 

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.

I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.

The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.

But my time came.

Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.

While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.

Somehow, I survived.

The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.

I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.

Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.

Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?

I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.

It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.

I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.

Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.

Complete Article HERE!