Preparing for the Worst, Hoping for the Best 

“Allan has cancer”, was all the voice said before dissolving into uncontrollable sobs.

Every now and then, I get pulled back into harsh reality when a grief once again touches me personally.  Al and Susan have been friends of mine for almost 30 years, one of these comfortable relationships where you don’t see someone for many months, but always pick up exactly where you left off.  But now, 40 years after exposure to asbestos in the workplace, Allan has mesothelioma.

It is almost superfluous to say that most people are ill prepared for the final days of their lives.  Even professionals such as health care providers experience uneasiness, and when you consider issues such as DNR (Do No Resuscitate) orders, and the legal, moral and ethical implications of patient and family choices, it is hardly surprising.

I went to visit Al this week. We had a ball, reminiscing and laughing for an hour or two about some of the stuff we’ve shared.  I couldn’t imagine us sitting there, morbid and sad, enduring the lonely silence of not knowing what to say, because our relationship has never been like that.  It has been fun.  So why change it now?  Why treat him any differently than I have before.

We had our serious moments, of course, and “denial” was not the agenda but I learned something very significant. I think we need to decide if we are “living with”, or “dying from” our diseases.

Both concepts have merit.  In movies the last minutes of life are so obvious.  The music, the profound words, the meaningful glances all herald the impending moment of demise.  In real life many people live with disease for years before dying of them.  Most do not tend to die immediately, because sophisticated medical technology can keep us alive for so much longer.  Yet, all too often despite the obvious, the moment to say goodbye comes all too quickly and unexpectedly.  The chance to take that last trip, or get one’s affairs in order, or reconcile some outstanding issue we have been living with all slip away unfulfilled.

It is only when we realize we are dying that we turn our attention to living.

The following are some principles I have tried to practice and encourage when sharing with someone who is dying.

  • Spend time with people who are important to you.
  • Call or visit an old friend, and tell your story to those who will live on
  • Accept compliments and some gratitude.       Don’t make people wait till the funeral to say it.
  • Say “I Love You”, “I’m sorry”, “Forgive me”, and “I Forgive You” often.
  • Right old wrongs.
  • Forgive yourself and seek to make things right in your own heart.
  • Take a last trip or two.  Do things you’ve      always wanted to do.  Find ways to      spend your own life insurance.
  • Create a legacy for those you care about – a letter, a tape, a video for children      and grandchildren, or one for the significant dates in the future like,      graduations and weddings which you may not see but at which you can be      heard.
  • Say goodbye (or “until we meet again”)
  • Be at peace with the end to come and the uncertainty of when it may occur

To that personal list, as a professional I would add the following:

  1. Decide specifically about your wishes for issues such as: DNR, Hospitalization and end of life care so that your treatment will be as close as possible to what you want.
  2. Choose someone (power of attorney) to make decisions for you if you are too sick to make them for yourself.
  3. Write a will, and get all the legal ‘stuff’ about finances and property in order
  4. Arrange your funeral.  Talk to a funeral director about details.  If you don’t think about it now, others will have to when they feel least able to.  Plan your own funeral service and what you’d like your family to hear at that memorial.  Besides it’s a great way to get the last word.

It is important to balance the need to prepare for the worst with hoping for the best. We do not want to abandon hope or give up on the person. Miracles happen, remissions can occur, and there can be a host of possible outcomes in every situation.

On the other hand, whether we acknowledge it or not, we all die, and it is a wise person who lives their life, however long or short, with that certainty in mind. As the Book of Psalms reminds us, “Teach us to number our days that we may get a heart of wisdom.” It is when we finally confront the fact that life at it’s longest is still very short that we learn what are our priorities and what is really important.





This article, “Preparing for the Worst, Hoping for the Best” was found on the Centre for Grief Journey’s website, and can be found here.

Ten Facts About Hospice Care You May Not Know

Some people have the wrong idea about hospice care. They think that hospice is only about dying and that hospice is the place you go when there’s nothing more to be done. Nothing could be further from the truth. Hospice helps people with a life-limiting illness focus on living as fully as possible for as long as possible.

The National Hospice and Palliative Care Organization is working to people understand that hospice brings comfort, dignity, and peace to people facing a terminal illness. Hospice provides support and care for the family caregivers, too.

Last year, 1.65 million dying Americans were cared for by hospice. Yet, there are some important facts about hospice that people don’t know. And this may be keeping people from getting the best care possible, when they need it most.

  1. Hospice is not a place—it’s high-quality care that focuses on comfort and quality of life.
  2. Hospice is paid for by Medicare, Medicaid, and most insurance plans. Fear of costs should never prevent a person from accessing hospice care.
  3. Hospice serves anyone with a life-limiting illness, regardless of age or type of illness.
  4. Hospice provides expert medical care as well as spiritual and emotional support to patients and families.
  5. Research has shown that the majority of Americans would prefer to be at home at the end of life—hospice makes this possible for most people.
  6. Hospice serves people living in nursing homes and assisted living facilities.
  7. Hospice patients and families can receive care for six months or longer.
  8. A person may keep his or her referring physician involved while receiving hospice care.
  9. Hospice offers grief and bereavement services to family members to help them adjust to the loss in their lives.
  10. Research has shown people receiving hospice care can live longer than similar patients who do not opt for hospice.

If this information about hospice surprises you, take the time to find out more. The best time to learn about hospice is before you or someone in your family is facing a medical crisis.

Hospice makes the wishes of the patient
and family caregivers a priority. 

To read the article in full, you can find it here.

Acknowledging You Need Assistance

As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget to let others know we need additional assistance with providing care, or just need a break from the work of caring for someone.

caregiverSome ways to make your needs known include:

  • Work Options. If you are a working caregiver, it is important to discuss your needs with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.
  • Involve Older Children. Older children living at home may be able to assist you and/or your loved one. Such responsibility can help young people become more empathic, responsible, and self-confident and give you needed support.
  • Ask Others to Help. You can and should ask other family members to share in caregiving. A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs.
  • Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with your loved one or friend, and put it on the refrigerator or near the front door. If someone says, “let me know if there is anything I can do to help” you can point to the list.
  • Take a break from caregiving. Even if it is only 15 or 20 minutes a day, make sure you do something just for you.
  • Exercise. Whether it is a 20 minute walk outside or taking a yoga class, exercising is a great way to take a break, decease stress and enhance your energy.
  • Eat healthy. Your health and nutrition is just as important as your loved one’s, so take the time to eat well. If you are having difficulty doing that, ask for help and get others to fix meals for you.
  • Subscribe to caregiving newsletters or list serves for support.
  • Attend a support group for caregivers. Check with your doctor, hospice or local Area Agency on Aging for groups that meet for this purpose.
  • Seek professional help. Many caregivers have times when they feel lonely, anxious, guilty, angry, scared, frustrated, confused, lost and tired. If you feel like these feelings are overwhelming you, call your doctor, hospice or another community resource for help.

This article and more can be found at the National Hospice and Palliative Care Organization website at



Hospice Care Used More, But Often Too Late

1015 hospice

Twice as many elderly people died in hospice care as in a hospital or nursing home compared with a decade ago, but hospice is often treated as a last resort — and used too late to benefit patients and their families, says a study released Tuesday.

The researchers examined Medicare records for 840,000 people 66 or older who died in 2000, 2005 and 2009. They found intensive-care use, hospitalization and the rate of health care transitions increased in the last month of life before patients entered hospice. Length of stays in intensive care also increased.

Hospice care aims to address the physical, emotional, social and spiritual needs of dying patients and their families and to control pain, says the study’s lead author, Joan Teno, professor of health services policy and practice at Warren Alpert School of Medicine at Brown University in Providence.

But this study shows that “for many patients, hospice is an add-on to a very aggressive pattern of care during the last days of life,” she says. “We suspect their needs and their families didn’t get the support they needed.”

More than a quarter of hospice use in 2009 was for three days or less, and 40% of those late referrals followed a hospitalization with an intensive-care stay.

“I think every person needs to make a decision based on what is important for them in the last months of life,” says Teno, a palliative care physician at Home and Hospice Care of Rhode Island. “All too often, I see doctors take aggressive approaches with treatment and only talk to patients about hospice when there is futility.”

The study, published in The Journal of the American Medical Association, appears with an editorial calling for an end to the aggressive intensive care and hospitalization at the end of life by improving communication between patients and physicians to determine what patients’ want and by considering “a threshold of likely benefit and life expectancy for an ICU admission.”

“If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process,” write physicians Grace Jeng of the Yale School of Medicine in New Haven, Conn., and Mary Tinetti of the Yale School of Public Health.

“This country has invested heavily in building up ICU centers over the past 20 years; that pathway brings in the most money for doctors and hospitals,” says study co-author David Goodman, director of the Center for Health Policy Research at Dartmouth’s Geisel School of Medicine in Hanover, N.H.

But, he adds, “that’s not what patients really want. This needs to be about patient autonomy. By investing more in hospice and palliative care, we can truly meet the final wishes of our patients.”

Going to intensive care or moving a patient into a nursing home in their last days is spiritually disruptive to a person trying to find closure, Teno says, and also disrupts sleep and alters medicine schedules and diet.



This article was written by Janice Lloyd on February 5, 2013 and can be found in its entirety at

How to Recognize When You’re in Denial About Your Parents’ Health

It’s hard to face facts when a loved one is in declining mental or physical health—but denial may ultimately worsen the situation.


“Mom’s just not feeling well today, that’s all. If I just give her time, she’ll be on the mend and back to her old tricks.”

“I visited Dad just last week and he seemed fine to me. Poor health? You’re exaggerating.”

Denial can be a tricky thing. On the one hand, it can give us time to process stressful information—but if it spins out of control and goes on for too long, it can be a potentially harmful barrier to coping. When it comes to our parents’ health, we may not want to admit it when it’s time to seek help. Indeed, it may be very painful to think about a loved one in failing mental or physical health. But the potential dangers of not taking action far exceed the short-term pain that accompanies facing the reality of the situation.

What Denial Is, and Why It Happens

Denial can be mostly unconscious or have a deliberate component, but either way, it involves a lack of acknowledgement of something going on around you. You may be refusing to recognize a problem or stressful situation, or minimizing its severity. Sometimes, the situation you’re in denial about can be obvious to others—to a direct caregiver, for instance, in the case of a parent’s health.

Understanding what denial is and why it occurs is an important first step in recognizing whether we ourselves are experiencing it—and it helps us realize that denial is a normal human reaction and not something to beat ourselves up for: “Refusing to acknowledge that something’s wrong is a way of coping with emotional conflict, stress, painful thoughts, threatening information and anxiety,” says the Mayo Clinic. Simply becoming aware of denial is an important move forward, and an opportunity to change our own and our loved one’s situation for the better.

Recognizing Signs of Denial in Yourself and Others

When family members can’t recognize that a loved one is ill and needs more senior care than they can get at home, it can be a frustrating experience for caregivers. But denial can be even more pernicious when we are experiencing it ourselves. We may not even be conscious of our inability to accept the situation. If that’s the case, how can we alert ourselves to recognizing if there’s a problem? There are some tell-tale signs to watch out for if you’ve got a loved one whose health may be worsening:

  • Feeling stuck.“If you don’t seem to be making much progress dealing with a stressful situation on your own,” says the Mayo Clinic, you may be stuck in denial about the severity of the problem.
  • Ignoring signs of a health problem.For example, if your loved one has begun dropping things or tripping while walking, these may be signs of an impaired nervous system, says Dr. Carol Berman, Assistant clinical professor of psychiatry, NYU Medical Center, in the Huffington Post. If you find yourself ignoring symptoms, you may want to reevaluate the situation with a physician.
  • Pretending nothing has changed.Your loved one might not be able to do the things he or she used to do—drive a car, or walk somewhere unaccompanied—particularly if dementia is involved. It’s not reasonable—or safe—to expect them to do so.
  • Rationalizing behavior.Do you try to explain it away whenever your loved one does something unusual? Again, not accepting that a parent’s health has changed could put them in danger of accidents or injuries.
  • Getting angrier than usual.“You are suppressing your feelings when you’re in denial, so your anger and many other feelings will be much more intense than usual,” says Dr. Berman.

Moving Past Denial: Coping Strategies for Families

If the situations described above have you nodding your head in recognition—or if a trusted family member or friend has suggested you might be in denial—then what’s the next step? The Mayo Clinic suggests a number of strategies for getting your mind around the situation and coming to terms with your own feelings:

  • What are you afraid of? Denial often has its roots in fear. Ask yourself honestly what scares you about the situation, and allow yourself to express that fear and any other emotions you may have—either in a private journal, with someone you trust, or with a mental health professional.
  • Take a closer look. Are you falling back on irrational thoughts or beliefs about your loved one’s health? Again, be honest with yourself. Think realistically about what will happen if you don’t take action. Will there be negative consequences?
  • Reach out for help. Open up to someone you trust, attend a support group, or visit a counselor. Don’t forget to involve loved ones when it’s time to have that tough conversation. And if it’s time for your loved one to get help, make an appointment with a health care provider.

Has denial been an obstacle for you in making sure your loved one gets the senior care they need? What is your advice for readers in the same situation? Let us know in the comments.


This article was written by Sarah Stevenson on May 1, 2013 and can be found in its’ entirety at

How to Recognize When You’re in Denial About Your Parents’ Health

10 Reasons Families Fight About Senior Care

Caring for an aging loved one can be one of the most stressful family milestones. The sheer difficulty of the task, its high cost, as well as underlying family issues can collide to create a perfect storm of discontent. But when families put aside their differences and work together as a team for the best interest of their elderly loved one, they are often able to overcome this challenge and assure that their parent’s last years aren’t marred by bickering and strife.



Here are 10 reasons families fight about senior care, and advice about how to prevent these types of conflict from derailing you:

  1. Siblings View Parent’s Needs Differently

Adult siblings don’t always see care needs the same way. One child may have the impression that mom is doing fine at home while another feels that care must be put in place immediately.

Possible Solution: When siblings disagree about how much care a parent needs, or about whether the parent needs care at all, the conflict can often be resolved by seeking expert guidance. Arrange for a visiting nurse with a background in elder care assessments to see your older loved one at home and gauge the level of safety. Also seek information and guidance from the senior’s primary physician so that the assessment process is as thorough as possible. Clarification from healthcare professionals can help answer this question definitively instead of allowing it to become a point of contention that prevents progress from being made.

  1. Parent Resists Care

Sometimes the whole family is on board and agrees that mom or dad needs care, but the parent resists any change tooth and nail. It’s understandable; people value their independence highly, and are loathe to give up any of it.

Possible Solution: When you’re trying to persuade a parent to accept a move to a senior community, make it clear that you’re not trying to “put them away.” Help your parent understand your concerns and that they come from love. Also educate your parent about the senior care options that are available in the area. Your parent may imagine moving to some dreadful institutional situation while you have something much different in mind. Today’s assisted living communities are attractive and comfortable and may contrast sharply with what your parent is imagining. If your parent has advanced Alzheimer’s or dementia, you may be able to initiate proceedings to obtain guardianship, but you can’t force an elderly parent of sound mind to receive care. Our in depth article, Moving Elderly Parents: Convincing Mom and Dad provides includes additional guidance on dealing with this tough situation.

  1. Family Members Regress to Earlier Roles or Past Issues Resurface

When the immediate family comes together to care for mom or dad, they often revert to dysfunctional and unhealthy roles of the past. Sibling rivalry that has lain dormant during adulthood may suddenly rear its head again during the stressful process of caring for an aging parent.

Possible Solution: It’s not realistic to get along splendidly with everyone in your family, or for your parents needs to suddenly unite a family that was formerly divided. But recognize that you won’t always see the best behavior from your loved ones or agree with them on every issue. Encourage them to be caring and dignified during this process by setting a good example yourself. Be the “big person in the room” and avoid being sucked into feuds or bickering that feel as if they are a flashback to a disastrous family road trip of your childhood. Practice active listening, as family members who feel like their voice isn’t being heard are most likely to become frustrated.

  1. One Child Does All the Heavy Lifting

Often the child who lives closest to mom or dad will be the one that assumes the role of the main caregiver. When other family members don’t offer to help, the “lucky” child who is giving all the care can come to resent the siblings who have gotten off without having to help.

Possible Solution: Caregivers who have found themselves shouldering an inordinate portion of the burden from caregiving shouldn’t be afraid to ask other family members for help. Sometimes it is necessary to spell out your specific needs to your siblings rather than presuming that the needs are already understood. Outline to your siblings the challenges that you’re having, and any areas that they may be able to help with. While they may not be close enough to physically offer a hand, they may be able to contribute in other areas, such as by paying for caregiving related bills. They may also be able to host your parent in their home for short periods so that you can have a break.

  1. One Child in Control Excludes Others From Decision Making

A scenario almost opposite of the previous example occurs when one child takes over the caregiving role and leaves their siblings or other family members in the dark, perhaps even limiting access to their parent.

Possible Solution: It hurts to feel left out, but if your parent’s care needs are being met and they seem safe and happy, it might not be necessary to intervene further right now. If your relationship with the caregiving loved one is strained and you’re less involved then you’d like to be, strive to maintain an ongoing relationship with your parent nonetheless. If your parent doesn’t have a memory disorder like Alzheimer’s, you should be able to maintain a relationship by contacting your parent on the phone. If your sibling is acting as a gatekeeper and prevents you from reaching your parents this way, write emails or letters to show that you care, learn about the situation, and stay in touch.

  1. How to Pay for Senior Care

For many families, the most challenging part of arranging care is the question of how to pay it, particularly when our parents don’t have the funds to pay themselves. This scenario is increasingly common as many seniors’ retirement accounts still haven’t recovered from 2008 global economic meltdown and subsequent recession. Unless funding for care is found through government assistance like Medicaid or veteran’s aid, the adult children will have to look to their own pockets to pay for care…or they may look to one another. Should a sibling with a big income contribute more than a sibling who earns less? Should a family member who has been providing unpaid personal care be exempted from having to contribute? These questions, and others like them, have frequently kindled fiery family conflicts.

Possible Solution: Open communication is essential to preventing conflict. We shouldn’t presume that siblings will necessarily be able to contribute as much as we hope. If the cost of your parent’s care will require the grown children or other family members to help pay for the care, call a family meeting with all the people involved right away. Realistically establish thecost of care, and determine how much money needs to be raised between all the involved parties. Start by determining how much each person believes they can contribute, and if funds are still short, dig deeper as a group, talking about what each person might be able to sacrifice to make arrangements work. When these decisions are made in the open, with everyone at the table, future conflict is less likely. It’s only natural that the process should be as fair as possible, and that a sibling with a low income should not be expected to contribute as much as a sibling with a high income, but not all families agree on what’s fair and isn’t  In these cases the voice of a neutral but knowledgeable outsider. A Place for Mom Senior Living Advisors, who work directly with families as they plan a parent’s care, have defused many disputes between siblings over lengthy conference calls. Other professionals, such as  elder care mediators, can also help iron out areas of disagreement and help families build consensus.

  1. Balancing Caregiving with Raising a Family

According to data from the National Center on Caregiving, 60% to 75% of family caregivers are women. Very often, the same woman is raising children of her own (a Sandwich Generation Caregiver) and balancing the demands of a career to boot. It’s understandable that someone juggling these demanding roles, each of which could be considered a “full time job,” might get burned out irritable.

Possible Solution: Understand that your caregiving loved ones have limits and are not superheroes. Do what you can to ease the burden. Offer to help care for Mom or Dad, or your loved ones children, so she can have some time for herself. On the other hand, if you are the “sandwiched” family member and feel like you’re hanging on by a thread, don’t be afraid to ask for help. Consider arranging a family meeting to reorganize care for your older loved one in such a way that the burden is shared more equitably.

  1. Caring for Both Parents at Once

While it’s great that your parents have been able to grow old together, caring for two parents simultaneously is doubly challenging. When both parents need advanced care, the physical and financial strain is immense. But it’s also challenging when the level of care needed is imbalanced, or the two parents need different kinds of care – for example, one parent might need Alzheimer’s care while another needs skilled nursing. The heart wrenching prospect of having to separate your parents can cause tempers to flare, and the physical, financial, and logistic complexities of arranging care for two loved ones at once can raise stress levels to an all-time high.

Possible Solution: Speak with a Senior Living Advisor or another local expert to learn about care options for your parents that you might not have been aware of. Many communities offer multiple levels of care, or even different kinds of care, which allows married couples to remain together when they wouldn’t ordinarily have been able to do so. Hold family meetings to ensure that everyone understands each other’s concerns, and work to define a mutually agreed upon strategy for caregiving.

  1. End of Life Care

Loved ones often battle fiercely about end of life care. One child may want to arrange hospice care for a terminally ill parent, while another may advocate that every day lived is a victory. In both cases family members want what is best for their older loved one, but disagree about what that means. This type of conflict can be avoided when seniors, well before a medical crisis, write a living-will (also known as a healthcare directive) that specifies end of life wishes, and appoint a health care proxy to help implement the specified plans.

Possible Solution: Make sure that your parent has drafted a living-will (or healthcare directive) and has designated a healthcare proxy. We host an Essential Documents Checklist on our website for your reference.

  1. Estates and Inheritances

It’s incredibly sad to see families fight over an inheritance, but it happens all too often. Whether the dispute is over a treasured family heirloom a large sum of cash, it gets ugly fast. These ugly battles frequently occur when a will hasn’t been written or has become out of date, but they can even occur in cases when reasonable estate-planning measures have been taken.

Possible Solution: Disputes about inheritances can be ideal cases for family mediators.  A family mediator’s job is able to analyze these situations fairly and objectively, and help families find areas of common ground. While a perfect compromise may not be found through mediation, it’s almost always a preferable to suing a close family member over an inheritance.


This article was posted on March 1, 2014 by Jeff Anderson and can be found in its’ entirety here-


IN DEPTH: Hospice and Palliative Care

Hospice and Palliative Care

Quality of Life at the End of Life

For many seriously ill patients, hospice and palliative care offers a more dignified and comfortable alternative to spending your final months in the impersonal environment of a hospital. Palliative medicine helps patients manage pain while hospice provides special care to improve quality of life for both the patient and their family. Seeking hospice and palliative care isn’t about giving up hope or hastening death, but rather a way to get the most appropriate care in the last phase of life.

Talking about hospice and palliative care

For many in Western society, death remains a taboo subject. Consequently, many patients and their families remain reluctant to even discuss the possibility of hospice care or palliative care. While most people would prefer to die in their own homes, the norm is still for terminally ill patients to die in hospital, receiving treatment that is either unwanted or ineffective. Their loved ones usually have only limited access and often miss sharing their last moments of life.

Some families who do choose hospice care often do so only for the last few days of life, and later regret not having more time saying goodbye to their loved one. To ensure that your family understands your wishes, it’s important for anyone with a life-limiting illness to learn all they can about hospice and palliative care and discuss their feelings with loved ones before a medical crisis strikes. When your loved ones are clear about your preferences for treatment, they’re free to devote their energy to care and compassion.

Legal planning for the future

If you became unable to direct your own medical care because of illness, legal documents such as a Living Will, Power of Attorney, or Advanced Directive can set forth your wishes for future health care so your family members are all clear on your preferences.

Laws differ between states, so consult a lawyer or see the Resources section below to learn about your state’s laws.

How hospice and palliative care works

Hospice care focuses on all aspects of a patient’s life and well-being: physical, social, emotional, and spiritual. There is no age restriction; anyone in the late stages of life is eligible for hospice services. While specific hospice services around the world differ in the amenities they provide, most include a hospice interdisciplinary team, or IDT, that includes the patient’s physician, a hospice doctor, a case manager, registered nurses and licensed practical nurses, a counselor, a dietician, therapist, pharmacologist, social workers, a minister, and various trained volunteers.

The hospice team develops a care plan tailored to a patient’s individual need for pain management and symptom relief, and provides all the necessary palliative drugs and therapies, medical supplies, and equipment. Typically, hospice care is provided at home and a family member acts as the primary caregiver, supervised by professional medical staff. Hospice IDT members make regular visits to assess the patient and provide additional care and services, such as speech and physical therapy, therapeutic massage, or dietary assistance. Certified home health aides may also be deployed for help with bathing and other personal care services. Hospice staff remains on-call 24 hours a day, seven days a week.

A hospice IDT also provides emotional and spiritual support according to the needs, wishes, and beliefs of the patient. Emotional and spiritual support is also provided to the person’s loved ones as well, including grief counseling.

The benefits of hospice and palliative care

Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

Source: National Hospice and Palliative Care Organization

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice IDT often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

Since a hospice program offers substantial support and training for family caregivers, it also helps many patients feel less of a burden to their loved ones.

Misconceptions about Hospice and Palliative Care
Misconception Reality
Hospice makes death come sooner. Hospice neither hastens nor postpones dying. The aim is to improve the quality of remaining life so patients can enjoy time with family and friends and experience a natural, pain-free death. In some cases, hospice care can extend life.
Hospice is giving up hope; it’s better to fight for life. Most terminally ill patients experience less anxiety by refocusing hope on what might be realistically achieved in the time remaining. If continuing uncomfortable and painful curative treatment for an illness is fruitless, hospice patients benefit more from having their symptoms treated instead.
A hospice patient who shows signs of recovery can’t return to regular medical treatment. If a patient’s condition improves, they can be discharged from hospice and return to curative treatment, or resume their daily lives. If need be, they can later return to hospice care.
A hospice patient can’t change  his or her mind and return to curative treatment even if their prognosis hasn’t changed. A patient can go on and off hospice care as needed—or if they change their mind and decide to return to curative treatment. They may also enter hospital for certain types of treatment if it involves improving their quality of life.
Hospice care is limited to a maximum of six months. In the U.S., many insurance companies, as well as the Medicare Hospice Benefit, require that a terminally ill patient has a prognosis of six months or less to start hospice, but a terminally-ill patient can receive hospice care for as long as necessary.



Authors: Lawrence Robinson and Jeanne Segal, Ph.D. Find the full article here-




Art Therapy and Hospice

Art Therapy
A Parrot

Below is a wonderful article about the value of art therapy and hospice. Esteem Hospice, since its very foundation, has used art as a means of building esteem with our patients. Enjoy this article.

Art Therapy and Hospice

Whether the activity involves putting brush to paper or assembling images into a collage, expression through the visual arts can powerfully improve the quality of life for people with dementia and terminal illness.

Guided art activities can rekindle a sense of self in people with Alzheimer’s disease and other dementias by facilitating a reconnection with long-term memories, said Cordula Dick-Muehlke, Ph.D., executive director of the Alzheimer’s Family Services Center, Huntington Beach, Calif. For hospice patients, art therapy can afford the opportunity to find meaning and closure through the concrete expression of personal accomplishments, important relationships, and cherished experiences, Katy Barrington, Ph.D., professor of art therapy at the Adler School of Professional Psychology, Chicago, said in a separate presentation.

Profound Meaning

Art Therapy

Van Gogh Sisters

Benefits of Art Therapy in Dementia and Hospice Patients

“The process of dying is a unique and vulnerable time for anybody,” Dr. Barrington said, and art therapy can provide an excellent catalyst for the expression of thoughts and feelings as hospice patients near the end of life.

She presented the results of a qualitative study of three elderly female hospice patients in rural Wisconsin. The study was based on existential philosophy, which emphasizes the importance of individual responsibility, choices, actions, and self-examination.

With guidance from Dr. Barrington and a hospice social worker over the course of four visits, patients completed a collage in collaboration with a selected loved one based on a story about their lives. She also asked each selected individual to tell a highlighted story that included the patient. The collages were framed and presented to patients and their loved one in the final session.

The process of creating a piece about one’s life harmonizes with the goals and principles of hospice, which stress connectedness, dignity, respect for the patients’ choices, and giving patients as much control over their lives as possible as they attend to psychological, physical, social, and spiritual concerns, Dr. Barrington said.

Art therapy helps patients cope with anxiety about death and encourages meaningful reminiscence. The latter is particularly valuable because it enables patients to take stock of their contributions and legacies at a time when they might wonder whether they have accomplished anything worthwhile in their lives, she said. Dr. Barrington analyzed the meaning in the finished art pieces using grounded theory, a qualitative research methodology in the social sciences in which data (in this study, patients’ comments) are coded and grouped into similar concepts to generate a theory

She said that she anticipated having to “pull” stories out of the three patients. Instead, “all of them unloaded on me … and I probably had 20 different stories. This tells me that confronting death is huge, and that there is a need to talk or bring it all together–to bring life together.”

Each of the three patients talked about mentors in their lives who had helped them deal with struggles and personal choices. Creativity (skill in embroidery, quilting, and sewing) had also played a prominent role in each woman’s life, providing a means of navigating hardships, developing pride and dignity, saving money, and improving the quality of life for themselves and others. Their skills were parts of their legacies.

Through the creative process, patients “recognized that their experience was valuable, that it constituted knowledge, and that meaning came from that knowledge,” Dr. Barrington said. The project gave patients “choices and decisions to make, which made them whole and made them feel they were contributing to bettering their own lives, even as they confronted death.”

Creativity Despite Dementia

For people with dementia, activities have a different value. While providing an excellent vehicle for emotional release and social connection, art also can enhance cognitive functioning by helping individuals tap into brain functions that remain relatively intact, including long-term memory systems, Dr. Dick-Muehlke said.

“When we talk about art, we always talk about the creative process and the emotional process … but it’s important for us to recognize that art allows people with Alzheimer’s disease to use their preservedcognitive skills,” said Dr. Dick-Muehlke. She noted evidence that cognitive stimulation with medication might be more effective than medication alone (Dement. Geriatr. Cogn. Disord. 2006;22:339-45).

The neurodegenerative process of dementia impairs short-term memory, language, judgment, and visual spatial abilities. “We place a great deal of value on those [abilities] in our society. And we often forget about that other aspect of that person–the aspect of the person that is still so alive,” she said.

By tapping into what a person can still do and feel successful at, art helps individuals express essential features of themselves. Episodic autobiographical memories, such as “the day I got married” or “when I went to college,” as well as the long-term memories of skills and procedures called procedural memories often endure.

“People are very surprised that people with dementia can create such beautiful art,” said Dr. Dick-Muehlke. “Every time you see someone’s mouth drop is a time that you decrease the stigma of what it means to have Alzheimer’s disease.”

Birk, Susan. “Art therapy benefits hospice, dementia patients.(GERIATRIC PSYCHIATRY).” Clinical Psychiatry News. International Medical News Group. 2010. HighBeam Research. 21 Feb. 2011 <>.

7 Benefits of Hospice Care

Learn the advantages of hospice care for your ailing loved ones and your family.

Jennifer Geisman, Contributor
Articles> 7 Benefits of Hospice Care
nurse holding hand of a patient

When the doctor mentioned hospice as an option for Elaine Bleiden’s mother, Bleiden was surprised. “I was totally blown away, as I realized this is what end of life is like,” remembers Bleiden, who lives in Northridge, CA. I discovered the 7 benefits of hospice care. Esteem Hospice provides the 7 benefits of hospice care to all its patients and their families and caregivers.

For many, hospice is a frightening word because it is associated with end of life. But really the confusion is due to not understanding what hospice is and how it can help people who are sick and their families.

Often, the biggest myth surrounding hospice care is that the family has given up and hospice is a final surrender. But hospice is a way for people to prioritize the wishes of the patient and the family and is in no way “giving up.” It is a specialized care and support that works to create ease and comfort for the patient and the family.

Below are some of the benefits of choosing Esteem Hospice care for your loved ones.

  1. It Offers a Familiar Environment
    While hospice is sometimes provided in nursing homes and hospitals, it can also be provided in the comfort of the patient’s home or in a hospice facility. The focus is on finding a place that is calm, quiet and very different from the typical stressful buzzing of a hospital. Hospice care is a collaborative effort between the patient, the family, the hospice team and the doctor to impart a care regimen that benefits everyone.”Research has shown that people would prefer to die in comfortable or familiar surroundings rather than in an institutional setting,” says Spencer Levine, vice president of programs at the Hospice Foundation of America. “Hospice will come to the patient wherever he or she calls home.”
  2. It Provides a Comprehensive Plan, Competent Professionals
    The key to providing comfortable final days is a comprehensive plan that involves a team of medical and health care professionals, who address all aspects of a patient’s illness with importance on controlling and reducing pain and discomfort.You may be working with doctors, nurses, therapists, health care aides, clergy, social workers, etc.”Hospice workers have been there before — many times,” says Lauren Sommer, LCSW, a bereavement specialist at Seasons Hospice & Palliative Care. “Families find the experience they bring to the table invaluable as they navigate end-of-life care.”
  3. It Offers Personalized Care and Support
    Hospice care eases family anxiety, as hospice professionals are on-call 24-hours, allowing the family to rest in between visits. They can offer patients what they need, from companionship to a listening ear to a favorite food.”There were nurses and CNAs that would come and check on my mom,” relays Bleiden. “During the last four weeks of her life, hospice helped me make sure she was covered.”
  4. It Gives Patients a Sense of Dignity
    Hospice offers a chance to die with dignity. Hospice patients aren’t hooked up to loud machines, aren’t poked or prodded hourly by medical personnel and won’t undergo invasive procedures to prolong life.
  5. It Respects a Patient’s Wishes
    This is an essential element of hospice care. By placing a loved one in hospice, families can focus on spending time with the patient and not dealing with the red tape and extensive procedures of a hospital environment.”With physical, emotional and spiritual pain addressed, patients and loved ones can spend the precious time remaining concentrating on things that are important to them,” Levine adds.
  6. It Lessens Financial Burdens
    For many families, hospital bills can be overwhelming. Under hospice supervision, out-of-pocket costs are significantly reduced and Medicare, Medicaid and private insurances help cover hospice care. Check with your individual insurance to see what elements of hospice care are covered.
  7. It Provides Family Counseling
    Guidance and support are a necessary piece of the puzzle. Hospice helps families deal with the range of emotions that surround this difficult time, offering guidance from social workers and chaplains. In addition, hospice will also offer the family bereavement and grief counseling after their loved one has passed and help with some of the after-death tasks that need to be completed.”We asked the chaplain from hospice to officiate at my mom’s funeral, as she was the one that was with us for those last few weeks,” notes Bleiden. “She really did so amazingly,”

For Bleiden and her family, choosing hospice care for her mother was a calming and successful experience during a heartbreaking time. Bleiden was pleased with the 7 benefits of hospice care and the program and knows she made the right decision for her mother.

Jennifer Geisman is a freelance writer living in Los Angeles.

Why Planning for End-of-Life is Important

Planning for End-of-Life

planning for end-of-life


Care Decisions

Because of advances in medicine, each of us, as well as our families and friends, may face many decisions about the dying process. As hard as it might be to face the idea of your own death, planning for end-of-life, you might take time to consider how your individual values relate to your idea of a good death. By deciding what end-of-life care best suits your needs when you are healthy, you can help those close to you make the right choices when the time comes. This not only respects your values, but also allows those closest to you the comfort of feeling as though they can be helpful.

There are several ways to make sure others know the kind of care you want when dying.


The simplest, but not always the easiest, way is to talk about end-of-life care before an illness. Discussing your thoughts, values, and desires will help people who are close to you to know what end-of-life care you want. For example, you could discuss how you feel about using life-prolonging measures or where you would like to be cared for. For some people, it makes sense to bring this up at a small family gathering. Others may find that telling their family they have made a will (or updated an existing one) provides an opportunity to bring up this subject with other family members. Doctors should be told about these wishes as well. As hard as it might be to talk about your end-of-life wishes, knowing your preferences ahead of time can make decision making easier for your family. You may also have some comfort knowing that your family can choose what you want.

On the other hand, if your parents are aging and you are concerned about what they want, you might introduce the subject. You can try to explain that having this conversation will help you care for them and do what they want. You might start by talking about what you think their values are, instead of talking about specific treatments. Try saying something like, “when Uncle Walt had a stroke and died, I thought you seemed upset that his kids wanted to put him on a respirator.” Or, “I’ve always wondered why Grandpa didn’t die at home. Do you know?” Encourage your parents to share the type of care they would choose to have at the end of life, rather than what they don’t want. There is no right or wrong plan, only what they would like. If they are reluctant to have this conversation, don’t force it, but try to bring it up again at a later time.


Written instructions letting others know the type of care you want if you are seriously ill or dying are called advance directives. These include a living will and health care power of attorney. A living will records your end-of-life care wishes in case you are no longer able to speak for yourself. You might want to talk with your doctor or other health care provider before preparing a living will. That way you will have a better understanding of what types of decisions might need to be made. Make sure your doctor and family have seen your living will and understand your instructions.

Because a living will cannot give guidance for every possible situation, you probably want to name someone to make care decisions for you if you are unable to do so for yourself. You might choose a family member, friend, lawyer, or someone in your religious community. You can do this either in the advance directives or through a durable power of attorney for health care that names a health care proxy, who is also called a representative, surrogate, agent, or attorney-in-fact. “Durable” means it remains in effect even if you are unable to make decisions. A durable power of attorney for health care is useful if you don’t want to be specific—if you would rather let the health care proxy evaluate each situation or treatment option independently. A durable power of attorney for health care is also important if your health care proxy, the person you want to make choices for you, is not a legal member of your family. Of course, you should make sure the person and alternate(s) you have named understand your views about end-of-life care. If you don’t name someone, the state you live in probably has an order of priority based on family relationships to determine who decides for you. A few states let people name a health care proxy by telling their doctor, without paperwork.

Don’t confuse a durable power of attorney for health care with a durable power of attorney. The first is limited to decisions related to health care, while the latter covers decisions regarding property or financial matters.

A lawyer can prepare these papers, or you can do them yourself. Forms are available from your local or State government, from private groups, or on the Internet. (See To Learn More below.) Often these forms need to be witnessed. That means that people who are not related to you watch as you sign and date the paperwork and then sign and date it themselves as proof that the signature is indeed yours. Make sure you give copies to your primary doctor and your health care proxy. Have copies in your files as well. Hospitals might ask for a copy when you are admitted, even if you are not seriously ill.

Sometimes people change their mind as they get older or after they become ill. Review the decisions in your advance directives from time to time and make changes if your views or your health needs have changed. Be sure to discuss these changes with your health care proxy and your doctor. Replace all copies of the older version with the updated ones, witnessed and signed if appropriate.

You should also give permission to your doctors and insurance companies to share your personal information with your health care proxy. This lets that person discuss your case with your doctor and handle insurance issues that may come up.

Do you live in one state, but spend a lot of time in another? Maybe you live in the north and spend winter months in a southern state. Or possibly your children and grandchildren live in a different state and you visit them often. Because states’ rules and regulations may differ, make sure your forms are legal in both your home state and the state you travel to often. If not, make an advance directive with copies for that state also. And make sure your family there has a copy.

To Learn More

About Advance Directives and Living Wills: