Self-Care for Family Caregivers

First, Care for Yourself

On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.

Effects of Caregiving on Health and Well-Being

We hear this often: “My husband is the person with Alzheimer’s, but now I’m the one in the hospital!” Such a situation is all too common. Researchers know a lot about the effects of caregiving on health and well-being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers.1 The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.

Older caregivers are not the only ones who put their health and well-being at risk. If you are a baby boomer who has assumed a caregiver role for your parents while simultaneously juggling work and raising adolescent children, you face an increased risk for depression, chronic illness, and a possible decline in quality of life.

But despite these risks, family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They report:

  • Sleep deprivation
  • Poor eating habits
  • Failure to exercise
  • Failure to stay in bed when ill
  • Postponement of or failure to make medical appointments for themselves

Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs. Caregiving can be an emotional roller coaster. On the one hand, caring for your family member demonstrates love and commitment and can be a very rewarding personal experience. On the other hand, exhaustion, worry, inadequate resources, and continuous care demands are enormously stressful. Caregivers are more likely to have a chronic illness than are non-caregivers, namely high cholesterol, high blood pressure, and a tendency to be overweight. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed.

Taking Responsibility for Your Own Care

You cannot stop the impact of a chronic or progressive illness or a debilitating injury on someone for whom you care. But there is a great deal that you can do to take responsibility for your personal well-being and to get your own needs met.

Identifying Personal Barriers

Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, with taking care of others an easier option. However, as a family caregiver you must ask yourself: “What good will I be to the person I care for if I become ill? If I die?” Breaking old patterns and overcoming obstacles is not an easy proposition, but it can be done—regardless of your age or situation. The first task in removing personal barriers to self-care is to identify what is in your way. For example:

  • Do you think you are being selfish if you put your needs first?
  • Is it frightening to think of your own needs? What is the fear about?
  • Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
  • Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?

Sometimes caregivers have misconceptions that increase their stress and get in the way of good self-care. Here are some of the most commonly expressed:

  • I am responsible for my parent’s health.
  • If I donʼt do it, no one will.
  • If I do it right, I will get the love, attention, and respect I deserve.
  • Our family always takes care of their own.
  • I promised my father I would always take care of my mother.

“I never do anything right,” or “Thereʼs no way I could find the time to exercise” are examples of negative self-talk, another possible barrier that can cause unnecessary anxiety. Instead, try positive statements: “Iʼm good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind tends to believe what you tell it.

Because we base our behavior on our thoughts and beliefs, attitudes and misconceptions like those noted above can cause caregivers to continually attempt to do what cannot be done, to control what cannot be controlled. The result is feelings of continued failure and frustration and, often, an inclination to ignore your own needs. Ask yourself what might be getting in your way and keeping you from taking care of yourself.

Moving Forward

Once youʼve started to identify any personal barriers to good self-care, you can begin to change your behavior, moving forward one small step at a time. Following are some effective tools for self-care that can start you on your way.

Tool #1: Reducing Personal Stress

How we perceive and respond to an event is a significant factor in how we adjust and cope with it. The stress you feel is not only the result of your caregiving situation but also the result of your perception of it—whether you see the glass as half-full or half-empty. It is important to remember that you are not alone in your experiences.

Your level of stress is influenced by many factors, including the following:

  • Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
  • Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
  • Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
  • Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
  • Whether or not support is available.
     

Steps to Managing Stress

  1. Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Donʼt wait until you are overwhelmed.
  2. Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
  3. Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):“God grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    and (the) wisdom to know the difference.
  4. Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
     

Tool #2: Setting Goals

Setting goals or deciding what you would like to accomplish in the next three to six months is an important tool for taking care of yourself. Here are some sample goals you might set:

  • Take a break from caregiving.
  • Get help with caregiving tasks like bathing and preparing meals.
  • Engage in activities that will make you feel more healthy.
  • Goals are generally too big to work on all at once. We are more likely to reach a goal if we break it down into smaller action steps. Once you’ve set a goal, ask yourself, “What steps do I take to reach my goal?” Make an action plan by deciding which step you will take first, and when. Then get started!

Example (Goal and Action Steps):
Goal: Feel more healthy.
Possible action steps:

  1. Make an appointment for a physical checkup.
  2. Take a half-hour break once during the week.
  3. Walk three times a week for 10 minutes.
     

Tool #3: Seeking Solutions

Seeking solutions to difficult situations is, of course, one of the most important tools in caregiving. Once youʼve identified a problem, taking action to solve it can change the situation and also change your attitude to a more positive one, giving you more confidence in your abilities.

Steps for Seeking Solutions

  1. Identify the problem. Look at the situation with an open mind. The real problem might not be what first comes to mind. For example, you think that the problem is simply that you are tired all the time, when the more basic difficulty is your belief that “no one can care for John like I can.” The problem? Thinking that you have to do everything yourself.
  2. List possible solutions. One idea is to try a different perspective: “Even though someone else provides help to John in a different way than I do, it can be just as good.” Ask a friend to help. Call Family Caregiver Alliance or the Eldercare Locator (see Resources list) and ask about agencies in your area that could help provide care.
  3. Select one solution from the list. Then try it!
  4. Evaluate the results. Ask yourself how well your choice worked.
  5. Try a second solution. If your first idea didnʼt work, select another. But donʼt give up on the first; sometimes an idea just needs fine-tuning.
  6. Use other resources. Ask friends, family members, and professionals for suggestions.
  7. If nothing seems to help, accept that the problem may not be solvable now. You can revisit it at another time.

Note: All too often, we jump from Step 1 to Step 7 and then feel defeated and stuck. Concentrate on keeping an open mind while listing and experimenting with possible solutions.

Tool #4: Communicating Constructively

Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need. The box below shows basic guidelines for good communication.

Communication Guidelines

  • Use “I” messages rather than “you” messages. Saying “I feel angry” rather than “You made me angry” enables you to express your feelings without blaming others or causing them to become defensive.
  • Respect the rights and feelings of others. Do not say something that will violate another personʼs rights or intentionally hurt the personʼs feelings. Recognize that the other person has the right to express feelings.
  • Be clear and specific. Speak directly to the person. Donʼt hint or hope the person will guess what you need. Other people are not mind readers. When you speak directly about what you need or feel, you are taking the risk that the other person might disagree or say no to your request, but that action also shows respect for the other personʼs opinion. When both parties speak directly, the chances of reaching understanding are greater.
  • Be a good listener. Listening is the most important aspect of communication.
     

Tool #5: Asking for and Accepting Help

When people have asked if they can be of help to you, how often have you replied, “Thank you, but I’m fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can’t handle everything yourself.

Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.

Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength.

Tips on How to Ask

  • Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
  • Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no?
  • Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
  • Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do.
  • Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
  • Avoid weakening your request. “Itʼs only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with Grandma from 9 a.m. until noon?”
     

Tool #6: Talking to the Physician

In addition to taking on the household chores, shopping, transportation, and personal care, 37 percent of caregivers also administer medications, injections, and medical treatment to the person for whom they care. Some 77 percent of those caregivers report the need to ask for advice about the medications and medical treatments. The person they usually turn to is their physician.

But while caregivers will discuss their loved oneʼs care with the physician, caregivers seldom talk about their own health, which is equally important. Building a partnership with a physician that addresses the health needs of the care recipient and the caregiver is crucial. The responsibility of this partnership ideally is shared between you, the caregiver, the physician, and other healthcare staff. However, it will often fall to you to be assertive, using good communication skills, to ensure that everyoneʼs needs are met—including your own.

Tips on Communicating with Your Physician

  • Prepare questions ahead of time. Make a list of your most important concerns and problems. Issues you might want to discuss with the physician are changes in symptoms, medications or general health of the care recipient, your own comfort in your caregiving situation, or specific help you need to provide care. The physician only sees a moment in time with the patient. Make sure you let him/her know what your concerns are in terms of daily care/health.
  • Enlist the help of the nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about various tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home.
  • Make sure your appointment meets your needs. For example, the first appointment in the morning or after lunch are the best times to reduce your waiting time or accommodate numerous questions. When you schedule your appointment, be sure you convey clearly the reasons for your visit so that enough time is allowed.
  • Call ahead. Before the appointment, check to see if the doctor is on schedule. Remind the receptionist of special needs when you arrive at the office.
  • Take someone with you. A companion can ask questions you feel uncomfortable asking and can help you remember what the physician and nurse said.
  • Use assertive communication and “I” messages. Enlist the medical care team as partners in care. Present what you need, what your concerns are, and how the doctor and/or nurse can help. Use specific, clear “I” statements like the following: “I need to know more about the diagnosis; I will feel better prepared for the future if I know what’s in store for me.” Or “I am feeling rundown. I’d like to make an appointment for myself and my husband next week.” Or “I need a way for my mother to sleep at night as I am now exhausted being up every two hours at night with her.”

 

Tool #7: Starting to Exercise

You may be reluctant to start exercising, even though youʼve heard itʼs one of the healthiest things you can do. Perhaps you think that physical exercise might harm you, or that it is only for people who are young and able to do things like jogging. Fortunately, research suggests that you can maintain or at least partly restore endurance, balance, strength, and flexibility through everyday physical activities like walking and gardening. Even household chores can improve your health. The key is to increase your physical activity by exercising and using your own muscle power.

Exercise promotes better sleep, reduces tension and depression, and increases energy and alertness. If finding time for exercise is a problem, incorporate it into your daily activity. Perhaps the care recipient can walk or do stretching exercise with you. If necessary, do frequent short exercises instead of those that require large blocks of time. Find activities you enjoy.

Walking, one of the best and easiest exercises, is a great way to get started. Besides its physical benefits, walking helps to reduce psychological tension. Walking 20 minutes a day, three times a week, is very beneficial. If you canʼt get away for that long, try to walk for as long as you can on however many days you can. Work walking into your life. Walk around the mall, to the store, or a nearby park. Walk around the block with a friend.

Tool #8: Learning from Our Emotions

It is a strength to recognize when your emotions are controlling you (instead of you controlling your emotions). Our emotions are messages to which we need to listen. They exist for a reason. However negative or painful, our feelings are useful tools for understanding what is happening to us. Even feelings such as guilt, anger, and resentment contain important messages. Learn from them, then take appropriate action.

For example, when you cannot enjoy activities you previously enjoyed, and your emotional pain overshadows all pleasure, it is time to seek treatment for depression—especially if you are having thoughts of suicide. Speaking with your physician is the first step. (See the FCA fact sheet Depression and Caregiving.)

Caregiving often involves a range of emotions. Some feelings are more comfortable than others. When you find that your emotions are intense, they might mean the following:

  • That you need to make a change in your caregiving situation.
  • That you are grieving a loss.
  • That you are experiencing increased stress.
  • That you need to be assertive and ask for what you need.
     

Summing Up

Remember, it is not selfish to focus on your own needs and desires when you are a caregiver—itʼs an important part of the job. You are responsible for your own self-care. Focus on the following self-care practices:

  • Learn and use stress-reduction techniques, e.g. meditation, prayer, yoga, Tai Chi.
  • Attend to your own healthcare needs.
  • Get proper rest and nutrition.
  • Exercise regularly, even if only for 10 minutes at a time.
  • Take time off without feeling guilty.
  • Participate in pleasant, nurturing activities, such as reading a good book, taking a warm bath.
  • Seek and accept the support of others.
  • Seek supportive counseling when you need it, or talk to a trusted counselor, friend, or pastor.
  • Identify and acknowledge your feelings, you have a right to ALL of them.
  • Change the negative ways you view situations.
  • Set goals.
     

Complete Article HERE!

What to Expect When Witnessing a Loved One’s Death

By ,

Nothing prepares you for being present at the death of a loved one. The emotional enormity of the experience and its relative rarity give survivors little frame of reference to draw from.

“The time of life we call dying is an extremely difficult part of the life cycle, but a normal part,” says palliative-care physician Ira Byock, author of Dying Well. “The nature of it isn’t medical, it’s experiential.”

The death experience unfolds differently in each situation. But those who have witnessed “the passing” observe the following:

The dying person may talk to people not in the room, or may see other places.

“A few hours before she died, my mother suddenly said, ‘No, I’m not Sarah [her mother’s name],’ but she didn’t say it to any of us in the room. Then she was telling Dad she loved him. It was like she was having two conversations at once. One of the last coherent things that she said was, ‘Are you the gentleman who’s come to meet me?'” — Michele, a North Carolina mother of four

Dying people often seem to be in two worlds at once: here and not here. They may talk to or gesture toward people who aren’t visible to others in the room. Or they may describe things or places they see, such as a garden, a favorite location, or lights.

These “deathbed visions,” as British neuropsychiatrist Peter Fenwick, a neuropsychiatrist and specialist in near-death experiences, calls them, almost always take place when the person is clearly conscious — even though witnesses sometimes mistake the visions and speech for signs of delirium. Some dying people switch easily between conversations with those at the bedside and with someone unseen. The people and places are usually connected with feelings of peace and security. In the U.S. and the U.K., nearly three-fourths of visions are of friends and relatives who aren’t living, says Fenwick, author of The Art of Dying. About 13 percent of people seen are religious figures, compared to 50 percent of people in India who see Hindu figures. Seeing strangers is relatively rare.

Dying may seem to involve great physical effort.

“My mom had a dry mouth and scary raspy breath that worsened over a few days. But she didn’t die until the day we gave her morphine. I felt responsible, wondering if we had rushed things.” — Emma, a 45-year-old artist in San Francisco.

“Some go gently — you look up and their chest is no longer moving,” palliative-care physician Byock says. “But for others it’s hard to die. It’s like an animal shedding its skin, a physical struggle to wriggle out of this life.”

Younger people and those who are healthy aside from a single fatal illness often have the most difficult time. But dying can be effortful for anyone. Palliative care — comfort care including pain relief — improves quality of life to life’s end. Unfortunately, say hospice workers, families are often reluctant to use painkillers out of a misguided fear that they curb awareness or hasten the death process.

Morphine dosages given in hospice are only enough to ease pain, Byock says. Even with good comfort care, certain reflexive symptoms of the dying process, such as labored breathing, can still appear as distress. Mental confusion is another common effect of the organs — in this case, the brain — shutting down. (See 10 Signs Death is Near).

The personality of the dying person usually stays consistent to the end.

“My mother never lost her sense of humor. I was complaining about my brother not coming to my daughter’s birthday party. ‘So shoot him!’ she said in her typically droll way. My mother’s last words to me were instructions to kill my brother!” — Dawn Barclay, a New York manager in her 40s, who saw her mom through 18 months of complications of heart surgery and stroke

People tend to die as they lived, says Maggie Callanan, a hospice nurse and the author of Final Gifts, who has witnessed more than 2,000 deaths. “Nice people get even nicer, manipulators manipulate, funny people die funny,” she explains. “We all have ways of navigating through life, and when dying, those tendencies are intensified by 10.”

More things you may witness at a loved one’s death

The dying person may speak in metaphors.

“On the day she died, my mom kept talking about traveling, like, ‘Let’s go, what are we waiting for . . . oh, there’s a plane ahead of us . . . no, that’s not the right plane.’ She also told my dad that he should take a later flight. She was definitely going someplace.” — Patricia Anderson, 45-year-old Ohio insurance account executive

“The dying often use symbolic language, especially to indicate an imminent change or a need to go forth — to die,” says hospice nurse Callanan. Travel is one of the more common themes, such as talking about modes of transportation or about going somewhere (making a flight, a golfer talking about going golfing).

The person may also allude to “making ready” (packing, making checklists, issuing directions). Some observers think that this talk of journey-making is a subconscious way dying people let family members know they know they’re passing away. It’s a signal for families to offer reassurance — that they, too, understand what’s happening and to convey that although they’re grieving, they’ll look after one another and be all right.

“The family’s reassurances that they’ll be all right often bring the peace a dying person needs,” Callanan says.

The dying person may seem to choose the final moment.

“The hospice people had told me that sometimes people won’t die when their loved ones are in the room, especially if the person has played a protective role in their lives. Or that they hang on if they feel you can’t let them go. So before I stepped out to get something to eat, I told my Dad that if he had to go it was OK, that he had done everything he could to raise us and we could raise ourselves now. Not seven minutes later, a nurse met me in the hall and said he was gone. I guess I felt a bit cheated because I wanted to witness this crossing over.” — Lise Funderburg, Philadelphia writer

Many people report feeling “cheated” or as if they “let down” a loved one by not being there at the moment of death. Others blame themselves as “failures” for inadvertently allowing the person they love to die alone. In many cases the survivor had stayed glued to the bedside for hours, determined to be there, turning away or stepping out for only an instant.

But those who work in hospice think it’s the other way around: Passing away often happens minutes after loved ones leave the bedside, as if the dying person is choosing to spare them the final moment. This is especially true, they say, with individuals toward whom the dying person feels protective.

Also common: The dying person seems to hang on to wait for someone to visit or something to be said. One South Carolina woman’s mother lingered in hospice for months until she received the news that her also-ill, adored younger sister had died. She died herself the next morning. “It was as if she wanted to spare her sister her own news,” her daughter said.

The dying person often seems peaceful at the end.

“She opened her eyes, and the house grew quiet. Her face softened and all the wrinkles and tension went away. Later the hospice nurse recommended that I not watch them take the body out because it had stiffened, and I appreciated that because now I can remember the relaxed mother I saw last.” — Aoife, a designer from Northern California

Especially when the route has been long and marked by physical struggle, many people observe that the moments around death itself are calm. “So many people I talk to about dying tell me they wish they could die in their sleep. I’d estimate 95 percent of people dying naturally from illness go into brief coma — like a profound sleep state — before they die,” hospice nurse Callanan says. “So the good news is that most of us do die in our sleep.”

Jo Reichel, a teacher in Michigan, sat watching the Olympics with her father the morning he died after a summer full of repeat hospitalizations. “I was sitting on the floor next to his chair and kept looking between the TV and him. At 6:30 he was alive, and by 6:32, he’d simply stopped breathing. At first I wasn’t even sure I should wake my sisters to tell them, because he looked so relaxed.”

For Frances, an Ohio accountant, the moments after death were unreal but not frightening. “I’d never been in the room with a dead person before. But I had a strong sense that body wasn’t my father any more. It felt like he had up and left the room; it was terribly sad but also strangely peaceful.”

Witnessing a death is often transformative and brings survivors close.

“Seeing a person you love dying taps into the best parts of your nature.” — Lise Funderburg

Before experiencing the death of a loved one, many people view the prospect with dread. Afterward, they often look back on their death-witnessing experience as having been a horrible, grief-stricken time that nevertheless brought certain gifts. Among these: new insights into their own capacity for selfless love and caring, renewed or intensified bonds with other family members, a new respect for siblings or medical staffers, a healing of old wounds.

“The situation asked for grace, patience, and charity, so something I actually benefited from was to see I had a fairly deep capacity for those things that hadn’t been called on in the same way before,” says Funderberg, who wrote about her father’s long final illness in Pig Candy: Taking My Father South, Taking My Father Home. “Someone dying is a great prioritizer. What does something like the resentment you were holding onto matter now?”

To be sure, the passing away of a loved one can be almost unendurable. That in the end it is endurable seems to be both its blessing and its curse.

Complete Article HERE!

How These Med Schools Are Improving End-of-Life Instruction

It’s a shift toward care based on who the patient is and what he or she wants

By Bruce Johansen

While all medical students must witness a birth, being present for someone who’s dying is not a requirement. Dying has traditionally received little attention in medical school curricula. Interviewed by The Boston Herald earlier this year, Dr. Atul Gawande, surgeon, founder of the Massachusetts Coalition for Serious Illness Care and author of Being Mortal (also a Next Avenue Influencer in Aging) said his end-of-life training amounted to one hour of discussion during his first two years in medical school. He’s now part of an innovative effort to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.

What Matters Most at End-of-Life

“We’ve been wrong about what our job is in medicine,” Gawande writes in Being Mortal. “We think our job is to ensure health and survival, but really it is larger than that. It is to enable well-being.” Gawande emphasizes training students to discern what gives a person’s life meaning and then choosing a course of treatment based on what that information involves. It’s a shift away from a “fix-it” mentality, which focuses on prolonging life.

Gawande credits the transformation in his thinking to observing palliative care clinicians and geriatricians. On an episode of PBS’ FRONTLINE, Gawande explained that seeing his colleagues’ conversations with their patients taught him what he could do better for his own.

One of those colleagues, Dr. Jennifer Reidy, is chief of palliative care at UMass Memorial Medical Center in Worcester, Mass. and a University of Massachusetts Medical School professor. “What’s great about palliative care is that you can incorporate it into your practice no matter what specialty you are,” Reidy says.

Holding conversations about what matters most and “being able to treat people’s pain and other distressing symptoms that affect their quality of life are all things that any doctor should be able to do in their field,” she says. Reidy foresees eventual changes in training extended to entire care teams: nurses, nurse practitioners, social workers, chaplains and pharmacists.

Reidy was one of the first students to do a palliative care rotation during her training at University of Vermont’s Larner College of Medicine in the late 1990s. There she learned that the care plan should be driven by who the person is, not by the available technology or what was possible.

If a person is diagnosed with an incurable disease, she says, the essential question comes down to: How do you make the most meaningful use of whatever time remains?

According to Reidy, this often means “focusing on being with the people who they love, and being more in their ‘real lives,’” rather than in the hospital. Given the option to forego harsh, life-prolonging therapy, many take care of things left undone such as making amends or getting financial affairs in order.

“It’s so unique to whatever is meaningful for that person,” Reidy says.

Fired Up Students

While details of the curricula will look different, Reidy says students at each participating school will be taught complex communication procedures for breaking difficult news and having conversations about prognoses and end-of-life planning.

When it comes to communication, “no one gets a pass anymore,” says Reidy. What’s exciting to her is that students are fired up about these developments. “It really taps into their sense of meaning and purpose, and why they came into medicine in the first place,” she says.

Students are learning how to share information in chunks and in clear language, then to pause, listen, allow questions, allow silence, allow emotion and sit with someone’s sadness or anger.

“Then they’ll be able to figure out amidst all of this, what’s most important, what should we be focusing on,” Reidy says.

To ascertain what will bring well-being, Gawande promotes students learning to ask:

• What is your understanding of your illness?
• What are your fears and worries for the future?
• What are your priorities if time becomes short?
• What are you willing to sacrifice and what are you not willing to sacrifice?
• What does a good day look like?

Instead of prompting a conversation about death or dying, these questions get to the crux of: How do you live a good life all the way to the very end, with whatever comes?

Building Momentum

Tiffany Chen, a fourth-year University of Massachusetts Medical School student, is a “champion” of the project, says Reidy. Growing up in a multigenerational home with parents and grandparents, Chen was first exposed to palliative care during her senior year of college when her grandfather was diagnosed with Lewy body dementia at the end of his life. Two years later, when her grandmother was diagnosed with bladder cancer, Reidy was assigned to be her palliative care doctor. Chen credits Reidy’s care with changing her grandmother’s course of treatment and the “quality of her death.”

Combined with a love of helping people, that experience inspired Chen to pursue a medical career. She hopes to go into family medicine and eventually have a fellowship that’s integrated in geriatrics and palliative care.

Chen has taken leadership at her school, including being part of organizing a focus group of students interested in giving palliative care “more of a voice.” The new curriculum, she says, promises to make students “better equipped at baseline to have these conversations.” They’ll become more adept at reading people’s cues and better communicators overall, “by first listening,” she says.

“The biggest thing is actually practicing with someone who’s experienced observing, and then giving you feedback,” Chen says. At her school, a simulation lab and new training methods, including role-playing patient actors, are key.

Reidy feels hopeful that the consortium is part of a larger movement, noting that medical schools at the University of Rochester and Yale University have stepped up as leaders.

Massachusetts offers a new model — the first time each of a state’s medical schools have joined forces. It’s this collaborative element that is having an impact on her school’s administration, says Chen. “Prior to this, you’d talk about palliative care being very important and needing to be in the curriculum, but that’s true of a lot of things.” The partnership has created momentum.

Complete Article HERE!

Men Less Likely to Prefer Palliative Care Treatment at End of Life

“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,”

The bad of the unintended consequences cannot outweigh, or be greater than, the intended good outcome.

By Leah Lawrence

A small study has found that men with cancer were less likely than women to prefer palliative care if informed that continued treatment would not be helpful.

“These findings, which could partially account for the observed gender disparities in end of life care, underscore the need for future interventions to promote palliative care services among men,” Fahad Saeed, MD, University of Rochester School of Medicine and Dentistry, and colleagues wrote in the Journal of Pain and Symptom Management.

Prior research had shown that men and those with low educational attainment are more likely to still be receiving “curative” treatments weeks prior to death and are less likely to undergo palliative care or hospice. With this study, Saeed and colleagues hypothesized that these two groups would be less favorably disposed toward palliative care.

To test this hypothesis, they used data from 383 patients that were gathered in the Values and Options in Cancer Care (VOICE) study. In this study, patients were asked about their preferences for palliative care if they had been informed by their oncologist that further treatment would not be helpful. Palliative care was explained to the patients as care intended to provide comfort and improve the quality of life but not to cure.

Included patients ranged in age from 22 to 90 years, and 55.1% were women. The majority of the patients had also attended college.

Almost 80% of patients reported that they definitely (45.2%) or possibly (33.9%) would desire palliative care if informed that further treatment would not be helpful.

Women were about three times more likely to prefer palliative care compared with men (odds ratio [OR] = 3.07; 95% CI, 1.80–5.23). These odds decreased slightly in sensitivity analyses that accounted for additional covariates and ordinal regression.

“These gender differences may be explained by gender differences in role socialization,” the researchers wrote. “Men and women adopt beliefs about gender roles that reflect prevailing social norms. These beliefs guide decisions about socially acceptable and unacceptable attitudes such as being stoic, fearless, less expressive of symptoms, and invulnerable.”

“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,” they continued.

In contrast, the data did not support a greater preference for palliative care among those with more education. Patients with a high school education or less and those with a college education had comparable preferences for palliative care.

“It is not very likely, therefore, that education disparities in end-of-life care can be explained by education differences in preferences for palliative care,” the researchers wrote.

In addition, the study showed that older adults were less likely than younger ones to prefer palliative treatment (OR = 0.54; 95% CI, 0.31–0.94). To explain this, the researchers suggested that older patients may have a lack of knowledge about palliative care.

“In a survey of patients across the adult age range, more than three-quarters of the sample had never heard of palliative care,” Saeed et al said.

For terminally ill cancer patients, where you live can shape end-of-life care

By

If you are a terminally ill cancer patient, where you live can determine how much it will cost for you to die.

The last month of life for a Medicare patient diagnosed with advanced-stage lung or colorectal cancer cost an average of $13,663, according to a study published today in the journal Health Affairs. But that cost can also vary widely, the study suggested, from $10,131 per patient in the lowest 20 percent of hospital referral regions included in this study to $19,318 in the highest 20 percent.

What drives those price differences? A physician’s medical philosophy and practice styles propelled higher medical bills, and patients in geographic areas with fewer primary doctors and hospices per capita also tended to have higher end-of-life costs, the study said.

Researchers reached this conclusion after surveying physicians on what they believed, how those beliefs played out in practice and how skilled they were in delivering end-of-life care, along with patient and claims data.

These findings underscored how important end-of-life decisions are, even when a patient may be days away from death,said Nancy Keating, a health care policy professor at Harvard Medical School and physician who led a team of researchers for this study. For instance: Does it make sense to give a stage-IV lung cancer patient with virtually no prospects of recovery a fourth round of chemotherapy? Or would it be better to talk about entering hospice care?

“We need to do a better job of helping train physicians to feel more comfortable and be more comfortable talking about end-of-life care with patients,” Keating said.

Nearly 40 percent of the 3,139 doctors in the study said they strongly agreed that they were “well prepared” to offer end-of-life care. Roughly as many — 43 percent — said they would recommend chemotherapy to a patient with late-stage lung cancer, despite concerns about that patient’s ability to recover or the pain they might endure. Yet two-thirds of physicians said they would prefer hospice if they were terminally ill.

For patients, 12 percent of those surveyed said they believed “cancer can be cured” and as many patients said cancer treatment can result in “serious side effects,” according to Keating’s data analysis. More than a third of patients said they wanted treatment that could help them live longer “even if it causes more pain” and 43 percent of patients said they preferred such treatment even if it drained their finances.

This study joins a growing body of research on lowering health spending and the role of palliative and end-of-life care in improving the final days of a patient’s life, said Otis Brawley, who serves as chief medical officer for the American Cancer Society and did not contribute to this study.

“The growth of palliative and hospice care in the U.S. is really important for improving quality of care,” Brawley said.

For years, Keating has pored through Medicare and Medicaid oncology data to figure out how to better spend money. In this latest effort, she analyzed claims data for 1,132 Medicare patients age 65 or older who had been diagnosed with late-stage lung or colorectal cancer between 2003 and 2005. Her team then tracked those patients until 2012 using the Cancer Care Outcomes Research and Surveillance Consortium study that draws on registries of cancer patients.

She linked patient information from these two datasets to overcome what she sees as a weakness in many studies about health care costs — researchers often only see a snapshot of a living patient. This study tracked them throughout multiple points in time. That said, Keating concedes that a limitation of this study is that many patients died by the late 2000s , narrowing the pool of people who could be studied beyond that point. Most patients — 65 percent — died by 2005, within the first three years of the study period.

In this study, researchers scanned 26 hospital referral regions — from McAllen, Texas, to Manhattan, New York — of the 306 regions nationwide. Patients were assigned to these regions based on the ZIP code where they lived at the time they were diagnosed with cancer.

“In a perfect world, we would have gotten national data,” Keating said, but capturing responses from newly diagnosed cancer patients about their care preferences “would have been impossible.”

There are some “very human reasons” that may account for disparities in price and treatment preferences, Brawley said in an email to the PBS NewsHour. Sometimes, primary care physicians develop long-standing relationships with the families they serve, he said, and specialty physicians also forge bonds with families when a patient endures the trauma of receiving treatment for a life-threatening illness. This might make a physician more apt to suggestion additional interventions, despite negative side effects.

“Some would criticize them for believing too much in the medicine they practice,” Brawley said, “but my experience is it’s more complicated than that.”

The calculus of treating patients with advanced-stage cancer is difficult, said Laurence Heifetz, medical director at Gene Upshaw Memorial Tahoe Forest Cancer Center in Truckee, California, a rural cancer care practice he has built north of Lake Tahoe over the last 12 years.

A patient’s expectations don’t always align with what the best treatment might be or with what resources are currently available, said Heifetz, who also spent two decades treating cancer patients at 1,000-bed Cedars-Sinai Medical Center in Los Angeles.

When considering palliative care, it’s hard for doctors to know who has six months left to live — the threshold for offering end-of-life services, Heifetz said. And a treatment that works for one patient may not for the next, even if they have the same type of cancer, he said: “We don’t know who will respond, and then we’re blamed after the fact for giving an unnecessary drug to someone who dies.”

But Heifetz thinks he knows one way to bring down cost while delivering high-quality care: “An earlier, more honest conversation with patients will allow for more realistic acceptance of the sentence, ‘I guess it’s time to quit.’”

Complete Article HERE!

I Know You Love Me — Now Let Me Die

A physician laments the often-excessive care of older adults at the end of life

By Louis M. Profeta, M.D.

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then.

Still the Same Person

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

‘Enriched and Happy’

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”

Adding Time but Not Life

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

‘We Stopped Seeing Her’

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

A Slow, But Enormous Change

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.

Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.

‘What in the Hell Were You Thinking?’

We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Complete Article HERE!

Professional death coaches: A new type of doula

Two B.C. women Explore the sacred journey between life and death

Alison Moore and Sue Berlie

By

Death is no stranger to two Okanagan women, who have guided their loved ones through the unique journey.

What’s new, however, is their growing role in helping the wider community embrace a different kind of death experience.

“There’s a lot of paradigm shift(ing) happening right now, people want to talk about it,” said Sue Berlie, shamanic coach, death walker and psychopomp.

Berlie, alongside Alison Moore, a life-cycle celebrant and sacred passages doula are also both trained as home funeral guides through the Canadian Integrative Network for Death Education and Alternation (CINDEA). They are also facilitators of the Okanagan Death Cafe.

Celebrant Alison Moore

Death Cafes were created in 2004 and has spread around the world. The events offer unique opportunities for conversations about death, the dying process and preparation to be had. Through guided in-depth conversations with each other, participants find solace and a new understanding of a usually taboo subject. Currently, 6,588 Death Cafes have been hosted in 56 countries.

Berlie and Moore were drawn the worldwide Death Cafes because of their grassroots nature, and the high demand for people wanting to get more involved with the death and caring of their friends and family. They were also getting sick of the current “business” of dying.

“A lot of people want to die at home and aren’t given that opportunity, and when they do (die at home) we don’t let them lie there and have their friends and family come in where we can hold services … rather, the person dies and has been whisked off to a funeral home and everyone has been left there with a void,” Moore said.

Funerals cost somewhere between $1,000 to $12,000 according to Canadian Death Services Online , and B.C. currently has the highest rates for cremation in Canada.

Seventy per cent of North Americans prefer to die at home, and only seven per cent said they wanted to die in a hospice or palliative care home, in a survey conducted by Donna Wilson, at the University of Alberta. Wilson also teaches nursing and researches dying in Canada and the survey also found that 60 per cent of Canadians actually die in hospital and 10 per cent die in nursing homes.

Outside of religion, rituals to be held after death are lacking and that’s become a problem.

“People are having a deeper experience when helping and preparing for death, part of what we are excited about is helping people grieve well. You should die well and grieve well,” Moore said.

Moore’s education in the world of death and dying began when she found out she was expecting her first child and her best friend was diagnosed with stage four breast cancer.

 

“Here I was gestating life and my best friend was given three to six months to live. She ended up living on Elisabeth Kübler-Ross’ farm (a pioneer in near-death studies and author of On Death and Dying) and becoming one of the subjects in her book. She brought us on this journey of spiritual exploration with her,” Moore said.

Talking about death and dying hasn’t been difficult since that perspective-shifting experience. Now as a celebrant, Moore “marries and buries” people, guiding them through different life-changing experiences; the birth of a child, officiating marriages and officiating funerals.

Moore is now a certified death doula whose first guided her father through death.

“It was very interesting being on the inside, as a daughter, and being the person that was trying to hold space for the person I was caring for — it was an extraordinary experience. We are trained to focus on the person we are caring for, providing them with a beautiful quality of life and death. We are of service to the path that the person is taking, and it is a sacred one.”

Berlie, a psychopomp (a guide of souls to the place of the dead) takes a different spiritual journey in her work. There is no general scenario, as she works on a case by case basis. She can be there during a death, after, or if asked by a family member or the person who is dead to ensure their spirit is not trapped. Berlie also facilitates conversations, ceremonies and rituals. Berlie calls it dreaming themselves into their next life.

“It will always depend on what people believe, you have to stay within their beliefs, you cannot introduce anything. It is about them and what they want,” Berlie said. “Dreaming into what is next, is more of a conversation and I see that with the more Death Cafe’s we hold, the more people become open to other things and they start to explore within themselves wondering “well maybe my body doesn’t just shut down and that’s it for my spirit.””

Sue Berlie

Berlie works alongside spirit guides, spirit animals and the realms to help spirits continue onto the journey of what is next.

Her work began when she was 18 years-old and her best friend died suddenly in a car accident.

“He stood there clear as day and talked to me the night he died— I later went to a psychic 30 years later and she said “Oh who is that over your left shoulder? You have a bright gold orb hovering there, he hasn’t left your side.” It was my friend and he didn’t realize he was dead. He is my spirit guide and I believe he helps me in my work.”

Berlie later volunteered at a hospice and found she was not able to help people in their last stage of life in the way she felt compelled to. She changed her career in order to strengthen her ability as a psychopomp by becoming a shamanic practitioner, and certified death walker. Shamanic practitioners are healers who move into an altered state of consciousness to access a hidden reality in the spirit realms with the purpose of bringing back healing, power and information.

As a death walker Berlie accompanies people as the go onto their journey towards death, nurturing, enhancing and strengthening the capacity of the person about to die. While providing legal and practical knowledge to them and the family.

The next Okanagan Death Cafe series has yet to be scheduled but the women have decided to host them bi-monthly instead of annually to accommodate and continue the conversations around death and dying.

“What I would like to see and what is beginning in these dialogues on death and dying is, that people are opening up to the fact that the one thing we know when we are born is that we are going to die. We need to start embracing in our daily lives, because each day is a gift,” Alison Moore said.

For more information, or to find a Death Cafe near you please visit www.deathcafe.com

Complete Article HERE!