Tips for caring for loved ones at the end of their life

— Palliative-care experts on how to comfort a dying person and prepare yourself for the supportive role

By Caitlin Stall-Paquet

Though it’s a natural part of life, death is a tough topic for many of us — even in a country where palliative care is becoming the norm. According to a recent survey, 54.5 per cent of Canadians are dying at home or in community settings, such as hospices, rather than in hospitals. Given the country’s aging population, that number will increase dramatically in the coming years.

It can be overwhelming to care for a loved one who’s dying, to say the least, so we spoke to three experts — who deal with death every day — to get their advice.

Being honest about what’s ahead

Palliative care co-ordinator Shelley Tysick said it’s important for both the dying person and the caregiver to understand what’s ahead. “Preparing somebody, it alleviates a lot of stress,” said Tysick, a palliative-care co-ordinator at Victoria-based Island Health. “And any new experience, if we don’t really know what to expect, it’s hard to know what’s normal.”

Naturally, it can be hard to broach discussions about intimate caregiving, but it can help to do it at the right time. Tysick said creating a care plan early, when there may be less stress or overwhelm, is wise. “Part of that dying process does mean depending more … on others to care for you,” she said. “That includes your personal care, your toileting, your mouth care, your eating, all of that is part of that process. And so having a plan in place and how that could be supported early on, I think is really helpful.”

Anne-Sophie Schlader, executive director of Nova Home Care in Montreal, knows just how challenging this time can be and, on top of that, what it takes to do this type of work. She emphasized that caregivers need to bring a lot of themselves to this work. “Being respectful and compassionate, not passing judgment, being sensitive and dedicated — I would say those are all very important qualities,” she said. Schlader recommended that anyone thinking of being a caregiver assess their capacity honestly and respect their personal limits to avoid causing themselves undue emotional distress or trauma.

And don’t view it as a failure if you can’t be a caregiver. “If you’re not able to do this work, it’s not because you don’t love the person,” Schlader said. “It’s a question of personal boundaries. You will show your love for them in other ways. It’s important that you don’t define this role as either ‘I love you’ or ‘I don’t love you.'”

Deferring to the medical team — and the patient

As a caregiver, it can be useful to consider yourself an extension of the medical team (while, of course, never performing tasks reserved for professionals). Your proximity to the dying person can be a huge asset — changes you see in the patient could inform their treatment.

For instance, if you notice your loved one isn’t eating as much, it can be a sign of advanced illness or a gastrointestinal issue, the experts said. But caregivers might have a hard time letting the dying person take control of their diet, and try to push them to eat even if they don’t want to. This response is common, according to Tysick and Schlader, since keeping someone nourished can feel key to caring for them. However, rather than force the dying person to eat, the advice is to share this change in appetite with the palliative-care team as soon as possible.

Also, Tysick said it can be hard for people to take a step back and make space for our loved one’s wants. “I think we often sort of want to move in to fix things,” she said. “We … identify what looks to be the problem and/or what we think would be best … with a good intention to help — but not recognizing that that’s what we would want for ourselves, but not necessarily what that person may want for themselves, or what might be most meaningful.”

What someone wants at the end of their life is influenced by their social, spiritual and emotional needs and is an individual experience, Tysick said. “There is no one way [to die],” she said. “There’s no best way — there’s no right way.”

Offering comfort

This doesn’t mean there aren’t plenty of things you can do to care for your loved one and make them more comfortable, while keeping the stakes low. “Dying people need to be touched — gently, because sometimes they’re in pain,” Schlader said. “But even if it’s just placing a hand on them, they feel it, and it’s very comforting.” She said it can also help to play calm music, wash their hair, rub moisturizer on their back, change their pillow for a fresh one, and if appropriate, place a warm compress on any sore spots.

Meeting the needs of the dying person can get expensive, however, if you need to buy equipment, like a hospital bed. Kayla Moryoussef, a death doula based in Toronto, suggested shopping for these items second-hand in stores or online marketplaces, then reselling them or giving them away when you no longer need them.

Also remember that grieving together with your loved one can be healthy and a way to show you care. “The dying person has the right to grieve their own death, and that’s often overlooked,” Moryoussef said.

In fact, the experts we talked to said it’s essential that end-of-life caregivers make space for what their loved ones need to say. “With the dying person, it’s mostly about listening,” Moryoussef said. “It’s not about what I have to say — it’s mostly about what they need to talk about.” Part of her job includes helping her clients think through what’s important for them to do before they die, like writing goodbye letters and figuring out their last wishes.

Taking care of yourself as well

Devoting a considerable amount of time and energy to someone who’s nearing the end of their life is no small feat, and Schlader said caregivers should acknowledge the intense emotions that come with the effort. “Guilt is normal, and most caregivers are going to feel guilty if they take a break,” she said.

But, she added, you have to take care of yourself if you want to be helpful to your loved one. “You’re not failing that person,” she said. “You are recharging your battery.”

Complete Article HERE!

The strain of senior pets

— Caring for patients with life-altering needs can test the human-animal bond

By Steve Dale, CABC

It is sadly too routine that veterinary professionals diagnose a condition that quickly forces a pet family to become caretakers. The stress can be insurmountable on the human family, the pet, other animals living in the home, and the often forgotten veterinary professional.

Our pets are increasingly considered family members, and there may be the heartbreak and devotion to required caretaking. Twenty years ago, who would have thought pet hospice could be a viable option?

The list of life-altering changes for a pet may be long for the human family—everything from learning how to administer fluids to having to carry a large dog up and down stairs. How does an elderly pet owner do either of these things? Scheduling visits to see the general practitioner or a specialist might strain a busy family. The pet’s condition could even mean a child missing band practice or canceling family or business travel plans. Changing life plans can be financially costly, and so can treatment.

All of this and more may put a strain on you, the veterinary professional. Although some incredible human beings are natural caretakers and are able to deal with all this in stride, most clients are not quite so malleable. It is also no fun communicating a difficult prognosis and describing a long series of pharmaceuticals that can be alphabet soup in clients’ heads.

A normally amiable client might transform into a quite testy one. It is human nature to push back; however, this is where your patience, empathy, and professionalism should be applied. And remember, whatever is said is rarely personal.

Attempting to remember which medications to administer and when to give those drugs is tough enough. Also, consider some clients may simultaneously be dealing with health challenges requiring medications of their own or dealing with the illness of another family member.

Now add day-to-day difficulties, like administering pills to that dog or cat. When the well-meaning pet owner goes to a counter where the medications are and the fragile cat manages to make a break for it, it’s heartbreaking (and sometimes physically challenging) to push the pills. Sometimes, medications aren’t given because the pet owners feel guilty or that they aren’t capable of getting that pill into the animal.

Not only are human family members stressed, but so are the pets. The once beloved human family members are doing things that may cause temporary discomfort for the pet. Any chronic pain issues are likely being addressed, but findings from many studies demonstrate that pain can cause changes in mood, potentially even aggression, and also might cause behavior changes likes accidents outside a litter box. All this can profoundly impact both sides of the human-animal bond.

An animal not feeling well can feel anxious. After all, no one can explain to that animal what the medical condition is. What’s more, we know that pets, so closely bonded, will pick up on the stress of human family members. Anxiety is contagious.

Other household pets sense that stress as well. And they may exhibit behavior changes because of what’s going on. For example, if one dog has an accident indoors, a second dog might too. Life changes quickly from having fun with multiple pets to feeling frantic.

All this sure isn’t easy—and in many ways not so different from caretaking for a sick human family member, except the good and bad news is having the option of euthanasia when the time is right.

But how do pet owners know when the time is right? How many times have you been asked, “If this was your pet…?” And many clients do seek the professionals’ unbiased opinion, which can be exceedingly valuable, particularly with longtime clients. However, that question isn’t an easy one to answer, even if the answer is obvious.

To a great degree, all situations are different. Some clients simply cannot continue to cope with caretaking or perhaps the expense. Or, frankly, there are just too many accidents in the house or perhaps the dog has uncharacteristically bitten a family member. When the human-animal bond is fractured in a terminally ill animal, isn’t euthanasia a reasonable expectation?

Other clients can’t let go, as their bond is so intense and maybe even made more so through the process of caretaking—they simply can’t bear the notion of euthanasia. And your truthful suggestion is met with defensive resistance, even though the client said, “I want an honest answer.” However, the client really only wants an answer to support a predetermined opinion. Your guidance through this entire process begins with being available and expressing empathy.

Human physicians never deal with all the emotions and issues regarding euthanasia. I am doubtful all human physicians could easily step into the shoes of a veterinary professional. And, as I’ve said, as well as others, “Pet owners do not care how much you know until they know how much you care.”

Complete Article HERE!

End-Of-Life Nutritional Support

— Improving the remaining quality of life is at the heart of proper nutrition in order to support energy and stamina levels

The goal of nutritional support for individuals in palliative care is to improve the remaining quality of life.

By Barbra Williams Cosentino

She’s almost 70 and has struggled to control high cholesterol levels and pre-diabetes for much of her adult life, resisting tempting treats like strawberry shortcake and French fries. But now her appetite is gone, and stage four ovarian cancer is gnawing away at her insides.

She only wants ice cream, preferably chocolate with a cascade of caramel sauce. Her daughter is adamant she shouldn’t have it. “Mom, you know it’s bad for you,” she says. But her mother is dying, and the doctor says it’s essential for her to eat.

Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability.

The goal of nutritional support for individuals in palliative care (when potentially curative treatments have been deemed unsuccessful and have been stopped) is to improve the remaining quality of life. Proper nutrition impacts energy and stamina levels.

According to Courtney Pelitera RD, a registered dietician with Top Nutrition Coaching, cachexia, wasting of the body and loss of muscle and fat are frequently seen towards the end of life. This can lead to impaired mobility, unplanned hospitalizations and increased symptoms.

Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability. Because the gut is not functioning normally and people may be less physically active, several symptoms are often seen in people undergoing cancer treatment, living with cancer or at the end of life, says Pelitera. 

These changes impact appetite and ability to tolerate certain types of foods or liquids and may include:

  • Appetite loss, anorexia
  • Taste and smell changes
  • Diarrhea, constipation, nausea, indigestion and heartburn
  • Inflammation of oral mucosa and mouth sores, dry mouth
  • Difficulty chewing or swallowing (dysphagia), choking episodes

The Emotional Aspects of Food Refusal and Appetite Loss

According to Pelitera, “Sharing a meal is one of the most common ways to socialize. In most cultures, people use food to celebrate milestones and special occasions. It is also sometimes used for comfort and to cheer people up. When someone is ill, visitors will often bring casseroles or sweets.”

“Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”

However, it can be very upsetting when someone you care about is uninterested in eating or refusing previously enjoyed foods. It is painful to see someone lose weight and become weaker, even though it is the disease process and not only the decreased food intake that is causing it.

The inclination to push food and prepare elaborate meals to try and entice the person to eat is counter-productive. The ill person may feel guilty, as if they are letting you down, and might try to eat even though it can cause them physical discomfort. As Pelitera explains, “Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”

Complete Article HERE!

Breaking the ‘Widow Rules’

— I’ve lost two wives and I know there can be a better end-of-life experience and a better grieving process

By Jill Johnson-Young

When I tell my “how I got here” story, the usual responses are sad looks and a weird sigh that most seem to think fits responding to loss. You know that experience, especially if your partner has died. It’s one the grievers I work with learn to loathe.

It’s confusing when you smile in response. You are supposed to be sad, perhaps a bit hopeless, and, very possibly, needy. You have a role to play. And while we may be sad at times, we need to smile and feel capable just like everyone else.

Actors in the movie Steel Magnolias in a funeral scene. Next Avenue
Like the cemetery scene in the movie ‘Steel Magnolias,’ research shows that families experiencing terminal illness need humor in those around them.

You can insist that you are treated as a couple, not a caregiver and patient.

After the losses I’ve experienced on the ‘bingo card’ of life, my take on how to do illness, dying and grief is a bit different.

Working in hospice as a social worker and administrator added to that shift, and quite possibly to my sense of humor in talking about it. Hospice staff have a bit of a twisted sense of humor simply to survive, but we don’t take it out to share in public. We should. Research shows that families experiencing terminal illness need humor in those around them. Remember the cemetery scene in the movie “Steel Magnolias?”

A Need to Take Control

They also need a sense of control. Dying is not like the movies; it takes work, but there can be some magic in the end. It needs to be actively managed, not something that takes control of your life: the couple should make the decisions, with education, great hospice care and setting boundaries to preserve their roles.

You can insist that you are treated as a couple, not a caregiver and patient. You should be allowed to use your anticipatory grief together to finish your relationship, and to say goodbye in a way that works for you.

Terminal illness can be sneaky. You cope with the disease process and adapt, over and over. And suddenly that ongoing disease is now going to be terminal.

My first wife, Linda, survived metastatic breast cancer — but died of pulmonary fibrosis a decade later from chemo. My second wife, Casper, (yes, she was named after a friendly ghost) died of Lewy Body Dementia. Think Robin Williams, but not the funny part. That started with a weird assortment of symptoms that were repeatedly misdiagnosed. Her final diagnosis was months before she died, and only after I asked if that was what we were dealing with.

It was managing their illnesses and symptoms that allowed control over some of the craziness that is today’s medical system. (That, and being an outspoken wife who is also a social worker, much to their dismay at times.) I am not alone in that experience.

Steps to Take to Manage a Loved One’s Illness

So how do we manage facing ongoing illnesses that have the potential for becoming life shortening?

  • Document! I know, it takes time, and it feels unending. It’s hard to look at the words. Do it anyway. What are the symptoms throughout the day? What level is the pain? What works? What doesn’t? Who have you talked to? What have you been told? Take a medical notebook with you to every appointment.
  • Write a summary for doctor’s visits. Use bullet points for easy reading. Write down what you need from the visit. Expect care that meets your needs and follow-up.
  • Find an online community of caregivers/patients. They get it, where others will not. And they share survival humor.
  • Get your advanced directives done. Get paperwork in order: A POLST (Physician’s Order Regarding Life Sustaining Treatment), trust or will, caregiving plan, end of life plan, memorial plans. Consider hiring a private end of life doula. There are some great books out now (“I’m Dead, Now What?” is popular). The National Funeral Directors Association has some helpful resources about having hard conversations. Unfinished plans and paperwork make things harder, and take away your control when others step in to do them for you.

What happens when the illness gets worse? It would be nice if doctors would tell us that our loved one is now considered terminally ill, but the reality is many will not. Many physicians do not tell families or patients when an illness is no longer treatable. Some will mention palliative care to open the conversation, but won’t say hospice.

The National Hospice and Palliative Care Organization offers information about hospice care; hospice can extend life because a good care team reduces stress, and the support provided allows the patient and family to use their energy on quality of life, not battling insurance companies, pharmacies and unrealistic expectations of one another.

Complete Article HERE!

7 ways to support a loved one with terminal cancer

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’

BY Gina Van Thomme

It can be challenging to find the best ways to support a friend or family member with terminal cancer — that is, cancer that can’t be cured or has stopped responding to treatment.

You want to support your loved one, but not overwhelm them. You want to be there for them, but also give them space. You want to say the right thing, but perhaps have no idea what that is.

To help, we asked senior social work counselor Malory Lee for advice on supporting a loved one with terminal cancer.

Be present, even if you don’t know what to say

It can be hard to find the right words to say to a loved one with terminal cancer. But often, showing up with a listening ear is far more important than knowing exactly what to say.

“We don’t have to have an answer. We don’t have to even know what to say all the time. And we don’t have to be worried about saying the right thing all the time. I think most important is just being there,” Lee says.

Don’t be afraid of silence, either. Lee says resisting the urge to fill silence can give both you and your loved one the time and space to understand and process what you are going through.

Allow yourself to feel complex emotions

A terminal cancer diagnosis can understandably bring a variety of emotions. These might include sadness, fear, anxiety, anger, shock, hopelessness and existential dread. Lee says all of these emotions are perfectly normal.

Another common emotion is anticipatory grief, which Lee describes as grief for an expected death that hasn’t happened yet. 

“A lot of the time, it’s really the exact same experience as grief. It can feel the same and be just as intense as the grief we experience after a death,” she says.

Although these emotions can be uncomfortable, Lee notes it is important for those with cancer and their loved ones to feel them rather than ignore them.

While navigating emotions surrounding a terminal cancer diagnosis, Lee encourages caregivers to be aware of persistent hopelessness or suicidal thoughts which may point to depression. If you or a loved one is experiencing depression, reach out to a doctor or counselor for support.

“Going through grief and dealing with terminal cancer does not mean we have to feel depressed,” she says.

Avoid statements that compare or minimize someone’s cancer experience

Lee suggests avoiding excessive positivity or statements that start with ‘at least’ when discussing terminal cancer. While phrases such as “At least you had this time to prepare” or “At least you have time to spend with loved ones” may have good intent, Lee says they can minimize the pain someone with terminal cancer is experiencing. 

Similarly, approaching a loved one’s terminal diagnosis with too much optimism and positivity can have the opposite effect.

“It may discount a real emotion that someone is feeling and might make them feel like they can’t share what they’re actually going through,” Lee says.

While it can be tempting to share stories and reassurance, Lee also recommends avoiding comparison.

“Every person’s cancer story is so unique; you could even be dealing with the same cancer as someone else and just have a very different experience,” she says. “Listen to the person in front of you, listen to their experience, ask questions about what they’re going through rather than trying to bring in your experiences.”

And what if you do say the wrong thing? Simply acknowledge it, apologize and move on.

Help without being asked

“Let me know if you need anything” can sound like a helpful way to support someone with cancer, but it can also create work.

“It puts the burden back on the person with cancer to determine what they need or ask for help,” Lee says.

While being mindful of your loved one’s wishes and boundaries, consider little ways to help. Lee says this might look like dropping off dinner, helping with cleaning or errands or delivering groceries.

“If you feel there’s something you can do to make things easier, go ahead and do it,” she says.

If you’ve learned that a friend or acquaintance you haven’t spoken to in a while has terminal cancer, you might be wondering whether it is OK to reach out.

“As long as you show genuine care and concern, and again, respect their wishes, I think that’s fine, and can often be very much appreciated,” Lee says.

Keep including them

It might feel like cancer changes everything, but it doesn’t need to alter the way you spend time with a loved one.

“Don’t assume that someone with terminal cancer doesn’t want to do something or won’t be willing or able to join a gathering,” Lee says.

Lee notes that cancer can feel very isolating and, while many times patients are met with lots of support right after their cancer diagnosis, that support may dwindle over time. She encourages loved ones to keep reaching out to a friend or family member with cancer, even if it means finding new ways to accommodate physical limitations.

This might look like playing games together online, gathering closer to a loved one’s home or simply continuing to extend invitations even if your loved one has had to miss events in the past.

Don’t be afraid to talk about difficult topics

Cancer can feel like the elephant in the room, but loved ones don’t need to pretend it doesn’t exist.

Instead, Lee says to let your loved one take the lead in determining what topics are off-limits.

“If a person is uncomfortable sharing or talking about certain things, or if they don’t want to, respect their wishes,” she says.

But if someone with terminal cancer is open to discussing a range of topics, it is OK to ask about health or even end-of-life plans. Lee says having these conversations, while difficult, can ensure you are accommodating a loved one’s wants and needs.

“It’s very critical to make sure we are honoring those wishes. And we can’t honor those wishes unless we know what they are,” she says. 

Remember to take care of yourself

Lee recommends caregivers find a support system outside of the loved one they are caring for so they can process their emotions. She also encourages caregivers to take small breaks, even if they are only mental rather than physical.

“There’s no need to feel guilty to take time away to do something that’s truly for you,” she says.

Caregivers can find self-care resources and community by joining MD Anderson support groups or connecting with someone else who’s been there through myCancerConnection, our one-on-one cancer support community.

Finally, Lee says that it is possible – and healthy – to experience happiness during a difficult experience.

“Sometimes we think when we’re grieving or when we’re caring for a loved one who is ill, we have to be sad all the time, and that’s just not true,” Lee says. “In a healthy grief experience, we do experience the full range of emotions, and our feelings often come like waves. It’s perfectly healthy and normal to feel joy and happiness also while we’re grieving.”

Complete Article HERE!

Many Americans with dementia can’t get the hospice care they need

— Jimmy and Rosalynn Carter have drawn attention to the benefits of hospice care. But it’s not serving everyone well.

Former President Jimmy Carter holds hands with ex-first lady Rosalynn Carter in Plains, Georgia, on September 23, 2023.

By

Rosalynn Carter, whose unflagging advocacy for mental health reform and on behalf of human rights, democracy, and health programs redefined the role of a president’s wife, died on November 19 at age 96.

Half a year earlier, her family had shared publicly that Rosalynn had been diagnosed with dementia. She began receiving hospice care — i.e., end-of-life comfort care for patients and caregivers — at home in Plains, Georgia, two days before her death and died there peacefully.

Her husband, former President Jimmy Carter, also opted to receive hospice care nine months ago after multiple medical problems landed him in and out of the hospital. Although his family thought he was in his last days when he made the choice, he has surpassed expectations. “Rosalynn was my equal partner in everything I ever accomplished,” he said in a statement on the day of her death.

It’s not clear why the couple were in hospice care for such different durations. But in that difference are echoes of a nationwide phenomenon: The way hospice is paid for — and the way eligibility is determined — makes it a good fit for people with terminal illnesses with predictable end-of-life courses, like cancer. But for Americans with dementia, hospice care often becomes available much later in the illness than it’s needed — or is offered and then withdrawn repeatedly over the course of a long decline in health status.

To be clear, there’s no evidence this was Rosalynn Carter’s experience. But as both Carters’ end-of-life choices have drawn attention to hospice care and the value it can bring, it’s worth looking at who it works for, and who it doesn’t. The truth is that the US’s current hospice model doesn’t serve people with dementia as well as it could. Here’s why, and what could make it better.

Hospice care focuses on symptom relief and support for dying patients and their families

Many Americans hear “hospice” and think it’s equivalent to giving up.

In fact, hospice care is a type of medical care that centers a patient’s goals — and provides support to their caregivers — when they’re nearing the end of life. And as Jimmy Carter has so transparently shown us, the shift in care can be surprisingly nourishing.

In the US, the hospice approach and the mechanism to pay for it are two different things, explained Carolyn Clevenger, a professor and nurse practitioner who leads a dementia care clinic at Emory Healthcare in Atlanta. “There’s the hospice philosophy,” she said, and “there’s the hospice benefit.” This is what makes hospice care so different from other treatment approaches in the US: It not only prioritizes comfort over cure, but it also switches the patient over to a totally different insurance plan, often called the hospice benefit. (Medicare, Medicaid, and most private insurance plans have a hospice benefit.) As a result, all the care, supplies, and equipment a hospice organization provides its patients is generally fully paid for by the benefit.

The approach focuses on providing symptom relief rather than curative treatment. It generally includes a complete package of services to care for both the physical and emotional symptoms that come with nearing the end of life, and it provides support for both the patient and the family. A person in hospice care could get specialized medical equipment, such as a hospital bed, some home care, and in-home nurse visits. They and their families also benefit from social worker services, grief counseling, and spiritual services.

Hospice care reduces what insurers pay for care at the end of life. People in hospice typically don’t receive much pricey in-hospital care, so even though their insurer pays for a lot of other services, they ultimately save money. A study published earlier this year by NORC showed that for Medicare beneficiaries who got hospice care in their last year of life, Medicare spending was $3.5 billion less — more than 3 percent lower — than it was among those who didn’t.

But those cost savings don’t come at the expense of the patient’s well-being. In the same study, patients and families in hospice reported better quality of life and pain control, less physical and emotional distress, and less prolonged grief.

Lots of patients with longer life expectancies would benefit from hospice care, but can’t get it paid for

The hospice benefit makes important services available for seriously ill patients and their families. But to qualify for it, a person needs to have a life expectancy of less than six months. Where does that leave people who need the same services, but don’t have as grave a prognosis?

For people whose serious illness causes them a lot of symptoms and their caregivers a lot of strain, the broader field of palliative care — of which hospice is sort of a subset — can be extremely helpful, even when the life expectancy is relatively long. But in the US, the difference is that while palliative care can prescribe these services, it cannot generally pay for them the way the same services are paid for when they’re provided under hospice care.

In the US, there’s a stark difference between what regular insurance plans pay for and what hospice pays for. So unless they qualify for hospice, it’s hard for many Americans to get the full benefit of a comfort-oriented approach without breaking the bank. That’s complicated by the fact that doctors, patients, and caregivers often have a difficult time approaching conversations about the end of life.

The result of linking hospice access to a six-month prognosis leads to both overuse and underuse of the benefit, said Clevenger. Overuse comes into play when providers fudge a prognosis to get badly needed services that hospice provides for a patient who might not be terminally ill. Underuse happens among terminally ill people whose end-of-life planning has been delayed.

By the time they qualify for hospice, people with dementia look very different from people with other terminal illnesses

The six-month-or-less life expectancy that the hospice benefit hinges on looks different depending on what disease a person has. Broadly, it involves a combination of medical findings, declining function, and the absence of (or a patient’s refusal of) curative treatment.

What makes things particularly challenging for people with dementia is that it often progresses at a slower pace than other life-threatening conditions. By the time they get to the point where they qualify for hospice, they are much sicker than with other conditions, and their family is under much more strain than the families of others.

hat means “that person and that family’s experience is going to look very, very different from almost every other person who elects the benefit,” said Rory Farrand, vice president of palliative and advanced medicine at the National Hospice and Palliative Care Organization (NHPCO).

It’s a little easier to understand if you compare dementia with a condition like cancer. When a person with cancer runs out of curative options (like chemotherapy or radiation), health care providers can usually predict how many months they have to live within a reasonable margin of error. In many cases, people with the condition are still relatively functional at the time a provider tells them they have less than half a year to live.

It’s different for dementia, said Farrand. Dementia symptoms usually progress slowly, and there is no definitive treatment that cures it. According to the federal government’s criteria, to have a life expectancy of six months or less, people with dementia “basically have to be at a very, very, very, very advanced aspect of the illness — meaning that you are bedbound, you’re incontinent of bowel and bladder, a person has very few meaningful words,” said Farrand.< By that point, a person with dementia has likely been unable to function independently for a long time. Their caregivers — usually, their family — will have been bearing the strain of helping them dress, bathe, eat, and care for themselves for years. Additionally, the person has lost so much of their ability to make decisions that they can’t participate in their care. The services hospice provides are often really helpful to people with dementia and their families. In the last month of their lives, people with dementia in hospice care receive what their loved ones feel is better care, and experience less sadness or anxiety, compared with those not enrolled in hospice.

So while the care patients and families receive once they’re in hospice is helpful, it comes much later than it would need to if it were to really alleviate the immense caregiving burden that often comes with dementia.

Here’s what would better serve people with dementia and their families

Congress created Medicare’s hospice benefit in 1982. Since then, medical science has gotten better at preventing or treating a variety of diseases that commonly cause death in older adults, including cancer, heart disease, and lung disease. That means people are living longer — which means more of them are getting old enough to get dementia. If current population trends persist, more than 9 million Americans will have dementia by 2030, and 12 million by 2040.

Those people and their caregivers are going to need a lot of support, said Larry Atkins, chief policy officer at the National Partnership for Healthcare and Hospice Innovation. Unless people are insured by Medicaid, or have paid for long-term care insurance, they don’t have coverage for long-term care, he said.

Because it offers such supportive, wraparound care that provides for both the patient and the family, “hospice is the ideal care model,” said Atkins. But its requirement that eligibility hinge on a six-month prognosis means it’s unavailable to many of the people who would most benefit from it — including people with dementia.

Instead of relying on prognosis, said Atkins, hospice eligibility should depend on how sick a person is, how much help they need with daily activities, and how vulnerable they are to disease or death.

One way the US could make hospice’s benefits more available to people with dementia is by providing them under an expanded and more generously covered version of palliative care services — what Ben Marcantonio, NHPCO’s CEO, calls “community-based palliative care.” In this scenario, people would be able to access all of the good things hospice provides at whatever point their disease becomes burdensome to themselves and their families.

The Community-Based Palliative Care Act, a bipartisan bill introduced earlier this year, aims to make more of the services typical of hospice available to people who are still receiving curative treatment.

It’s worth noting that the US has tried this model, and it works: Several years ago, a handful of sites in the US trialed the Medicare Care Choices model, which allowed people to get hospice services while also receiving curative treatment, and it worked great — there was still plenty of cost savings, and high family and patient satisfaction.

Meanwhile, families can do some things to maximize the likelihood that the existing hospice benefit better serves them in the event of life-threatening illness, said Farrand. “Don’t be afraid of having conversations with your loved ones about what their wishes, goals, and values are as it pertains to their illness,” or how they’d want to live their lives if they were diagnosed with a serious illness.

And if they’re in the midst of a serious illness, they should ask for a palliative care consult, said Marcantonio. People sometimes misunderstand palliative care as “giving up,” said Farrand, but both palliative care and hospice involve “aggressively ensuring that your quality of life is what you want it to be — that you can live the best you can, even while living with a serious illness,” she said.

“If anything, it’s the absolute opposite of the idea of giving up.”

Complete Article HERE!

Physicians: Don’t Ignore Sexuality in Your Dying Patients

By Pebble Kranz, MD

I have a long history of being interested in conversations that others avoid. In medical school, I felt that we didn’t talk enough about death, so I organized a lecture series on end-of-life care for my fellow students. Now, as a sexual medicine specialist, I have other conversations from which many medical providers shy away. So, buckle up! Here’s a topic that rarely emerges in medical care: sexuality at the end of life.

A key question in palliative care is: How do you want to live the life you have left? Where does the wide range of human pleasures fit in? In her book The Pleasure Zone, sex therapist Stella Resnick describes eight kinds of pleasure:

  • pain relief
  • play, humor, movement, and sound
  • mental
  • emotional
  • sensual
  • spiritual
  • primal (just being)
  • sexual

At the end of life, both medically and culturally, we pay attention to many of these pleasures. But sexuality often is ignored.

Sexuality — which can be defined as the experience of oneself as a sexual being — may include how sex is experienced in relationships or with oneself, sexual orientation, body image, gender expression and identity, as well as sexual satisfaction and pleasure. People may have different priorities at different times regarding their sexuality; but sexuality is a key aspect of feeling fully alive and human across the lifespan. At the end of life, sexuality, sexual expression, and physical connection may play even more important roles than previously.

“I just want to be able to have sex with my husband again.”

Z was a 75-year-old woman who came to me for help with vaginal stenosis. Her cancer treatments were not going well. I asked her one of my typical questions: “What does sex mean to you?”

Sexual pleasure was “glue” — a critical way for her to connect with her sense of self and with her husband, a man of few words. She described transcendent experiences with partnered sex during her life. Finally, she explained, she was saddened by the idea of not experiencing that again before she died.

As medical providers, we don’t all need to be sex experts, but our patients should be able to have open and shame-free conversations with us about these issues at all stages of life. Up to 86% of palliative care patients want the chance to discuss their sexual concerns with a skilled clinician, and many consider this issue important to their psychological well-being. And yet, 91% reported that sexuality had not been addressed in their care.

In a Canadian study of 10 palliative care patients (and their partners), all but one felt that their medical providers should initiate conversations about sexuality and the effect of illness on sexual experience. They felt that this communication should be an integral component of care. The one person who disagreed said it was appropriate for clinicians to ask patients whether they wanted to talk about sexuality.

Complete Article HERE!