Palliative care for the living — more education is needed

A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.

But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.

Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.

One reason for this is that many people inaccurately think of palliative care as only care for the dying.

The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.

Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.

People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.

Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.

Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.

To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.

But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”

Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.

Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.

While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”

Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.

Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.

To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.

Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.

Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.

The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.

Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

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!

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!

Doing Death Differently

Death doulas: the end-of-life guides who are recreating the dying experience

By Isabel Bird

When Rebecca Lyons’ great aunt died, her body remained with the family.

Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.

“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.

“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”

It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.

Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.

A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.

Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.

Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.

Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.

She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.

“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.

“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.

“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”

Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.

Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.

She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.

“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.

Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.

“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”

Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.

“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.

“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”

Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.

Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.

Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.

She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.

“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”

Ms Jarvis stressed that early planning was important.

“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.

“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”

Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.

Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.

“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.

“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”

She added that alternative options are actually a return to the old way of doing things.

“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.

“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”

Complete Article HERE!