Archive for November, 2008

What is Hospice Care?

Wednesday, November 26th, 2008

Hospice CareHospice care was created less than forty years ago. Florence Wald, who recently died on November 15, 2008, is considered to be a leader in U.S. hospice care. She helped to organize the first program, Connecticut Hospice in Branford in 1974, and her husband and children also became involved in the hospice movement.

Wald’s work included efforts to bring hospice care to U.S. prisons and she trained inmates as hospice volunteers. The hospice movement, which focuses on providing care for terminally ill patients and their families, now includes more than 3,200 programs nationwide.

Mrs. Wald was a Dean at Yale Nursing School when, in 1963, a friend persuaded her to attend a lecture by Dame Cicely Saunders, a British physician who planned to open the world’s first hospice in Sydenham, south of London. Saunders’ hospice, St. Christopher’s Hospice, opened in 1967, and Mrs. Wald went there to work and learn. After returning, she and several Yale colleagues joined forces to establish the Connecticut hospice.

Wald’s hospice work was based upon the fact that terminally ill patients during that time period were subject to a medical ethic that ignored a patient’s transition from life to death, and her work gained national attention. Hospice care took a substantial leap in credibility when Congress ordered Medicare to begin to pay for the service in 1982.

Philosophy: The cornerstone to hospice care is Elizabeth Kubler Ross’ philosophy about death and dying, grief and grieving. After years of listening to and talking with dying patients, the lessons that evolved shaped today’s treatment for terminally ill patients and for their families.

Treatment: Usually, hospice patients have less than six months to live according to a physician’s diagnosis. These patients have chosen to stop curative treatment and to allow family members to learn how to provide care. Finally, most hospice patients prefer to die in their homes, surrounded by familiarity rather than in a clinical setting.

Financial issues: Although Medicare can pay for hospice care, many people who aren’t listed with Medicare may not be able to pay. And, many hospice organizations are beginning to face losses, as a federal regulation cut Medicare reimbursement rates to hospice programs after October 1, 2008. While many programs do not want to cut services, they may be forced to reduce staff and abilities to serve the dying through this rate cut. State funding, also, may be limited depending upon state financial issues.

Find a hospice: The National Hospice and Palliative Care Organization (NHPCO) can help you or a family member find a hospice near you. Established in 1992, NHPCO is committed to leading global, philanthropic efforts advancing quality, compassionate, end-of-life care for all. Their vision is “a world where individuals and families facing serious illness, death and grief will experience the best that humankind can offer.” Use their form to find a member organization near you, so you and your family members can benefit from their programs.

NHPCO is one organization that can help many people end their lives in dignity, surrounded by loved ones and with special care provided by hospice workers. If the government cannot support hospice care financially, the help needs to come from individuals, people who care about how the transition from life to death is conducted.

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On Death and Dying: Stages of Grief

Monday, November 24th, 2008

Depression is one stage of the grief process.Until the 1970s, many physicians were intent on keeping the living alive, rather than listening to patients’ death wishes. That changed when Elisabeth Kubler-Ross began to listen to the dying and to their family members. Her extensive work led to the book, On Death and Dying, in 1969.

Dr. Kubler-Ross first introduced and explored the idea of the five stages of dealing with death. Through sample interviews and conversations in this book, she provides the reader with a better understanding of how death affects the patient, the patient’s family, and the professionals who serve the patient. Now, Kubler-Ross’ stages of grief are used in many situations where a person deals with real or imagined loss – including alcohol and drug rehabilitation, post-traumatic stress disorder (PTSD) and amputation.

Here are the five stages of grief, along with a brief explanation on how a person who has been diagnosed with a terminal illness might react:

Denial and Isolation: When a person faces news that is a shock, such as a diagnosis of a terminal illness, the first reaction is denial. This is the body’s natural reaction to news that proves unbearable. Some patients, for instance, may react by ignoring treatments or by ignoring a doctor’s advice. Family members may become frustrated or frightened over the patient’s cavalier attitude during this phase. The patient also may try to isolate others, so that patient cannot hear the truth from others.

Anger: Once the patient begins to experience symptoms of that disease, or once the reality of treatment options begins to sink in, the patient may become angry. “Why me?” is the question, and no amount of comfort may dent this anger. Anger is an emotion that arises when someone wants something to change, but a terminal illness is difficult to change. On the bright side, a terminally-ill patient who shows anger means that this person has moved beyond denial.

Bargaining: When the patient realizes that anger isn’t going to change anything, a phase begins where a patient begins to bargain against the problem. A religious person might bargain with God, asking for a cure if only the patient changes his or her ways. Other patients may begin to explore other treatment options in hopes that alternatives will cure them. Family members may become worn out during this phase, as the patient often becomes peevish or overactive in their search for a way out of the disease.

Depression: All phases of grief are heartbreaking to the family member, but this phase, perhaps, is the most disheartening. The patient loses interest in treatment and sincerely doesn’t care about the present or the future. Guilt also figures in this phase, as the patient begins to feel responsible for the sadness and, even for the disease. Guilt is anger turned inward, against the person who feels it. Depression is a result of deep guilt and anger. While family members may feel as helpless as the patient at this point, remember that this is the last stage before the patient accepts the current situation.

Acceptance: A patient can reach acceptance at any point, but some people take longer than others to reach this goal. Family members may need to face the possibility that their loved one may never reach this phase before death. On the other hand, acceptance of death and dying may come months before the actual death and it may come on the actual deathbed. In this phase, the patient is ready for whatever happens next.

Remember that family members also go through the five stages of grief upon news about a family member’s illness or death. This is why many professionals suggest counseling for entire families that are involved intimately with death and dying. This counseling is affective even for those who have lost a limb or mobility or for family members who face difficulties dealing with their loved ones’ losses.

To get ’stuck’ in any one of the phases is a possibility as well, so counseling can help many people move into the next phase. Grief, after all, is a healing process and – like any other healing process – progress can move forward and backwards at unpredictable rates. But, one of the best medicines for moving forward (even for the terminally ill patient) is to take care of yourself with good self-care habits.

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Posted in Death & Dying, Grief and Grieving | 5 Comments »

What is Long-Term Care?

Sunday, November 23rd, 2008

Long-term care can help those you love as well as yourself.Long-term care refers to a broad range of medical and personal services designed to assist individuals who have lost the ability to function independently. While the need for long-term care often refers to individuals with chronic disabilities or physical or mental impairments, long-term care also applies to individuals who are at the end of life transition.

Few individuals think about long-term care when healthy, as this subject usually lands at the end of the list of things to do for the day. But, when accidents occur, or when someone is diagnosed with a terminal illness, long-term care often becomes a subject that is addressed. Many times, an attending doctor or a family member will broach the subject, especially when care for an individual becomes overwhelming.

The choice of a long-term care option often depends upon whether the stricken individual carries long-term care insurance (LTCI). Some insurance policies focus specifically on long-term care, while others may subsidize only certain forms of long-term care. In the latter case, it is important to understand the levels of care available:

  • Skilled care: This is round-the-clock care designed to treat a medical condition. Often, a treatment plan is established and ordered by a physician and performed by accomplished medical personnel.
  • Intermediate Care: Often, a physician will order this type of care as well, and a plan where registered nurses, licensed practical nurses and nurses’ aides carry out the doctor’s orders.
  • Custodial Care: This type of care can be carried out by someone who lacks professional medical skills, but who is trained and supervised by a physician or by an organization that specializes in care such as bathing, eating and dressing.

Note that the terms above may be defined differently by Medicare.

An individual can receive long-term care in a nursing home, through a hospice, through home-care options, an adult day-care center or through respite care. Of all these options, the nursing home and hospice care are designed to care for terminally ill patients. With that said, hospice care can be provided in the home. This is especially comforting for those who wish to die in their homes, surrounded by familiar objects and friends and family.

Hospice care is varied, and can include a medical plan designed by a physician or simple care for everyday activities. Home health care often is provided by a visiting or traveling nurse, a therapist or a home health aide. The visit times can range from all-day or all-night care to several visits to the home each week. The visit frequency will depend upon the care required. Once a plan is in place, professionals can help arrange for services, monitor care, and periodically help re-evaluate the plan and make adjustments based upon the client’s personal preferences and needs.

Hospices also treat individuals outside the home in special facilities and even through a local hospital program. Sometimes, family members may need a respite from caring for an elderly or terminally ill family member, and hospices also can provide this service. They may offer temporary care for an individual so family members can take some time off for their own needs.

The individual’s choice of long-term care often depends upon financial and insurance issues, the number of family members who can agree to help provide care, and the options available to the patient. In some cases, the long-term care options are limited; however, some research about long-term care before it is ever needed can open up more possibilities when it’s needed. Some programs, such as the Federal Long Term Care Insurance program (FLTCIP) can help with understanding long-term care and possibilities provided by the U.S. Government.

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Estate Planning Basics

Friday, November 21st, 2008

Plan your life and your death.You may think that you’re too young or too poor to plan an estate. If you die, however, no matter how poor or rich you judge yourself, your family may be grateful if you leave directions on how to distribute your worldly goods. A simple will, for instance, will help survivors understand what to do with your car and furniture. If you’re wealthy, more elaborate plans can help you to avoid estate taxes.

Estate planning means that you learn to manage and preserve your assets while alive, and conserve and control the distribution of these assets after your death. This planning is shaped by your age, health, wealth, lifestyle, goals and many other factors. By definition, estate planning always is in flux, because your age, health, wealth, lifestyle and goals change constantly. You might be able to control the estate planning without professional help, or you may need to enlist the help of accountants, attorneys and financial planners.

If you’re worried about how to manage your estate – no matter how large or small – the following tips might help you with your research. Once you understand what you need, you can head in the right direction for you to find the help you need to put your mind – and the minds of your loved ones – at ease.

  • Are you over age 18? Incapacity can strike anyone at any time, and once you’ve reached the age of consent, you’re on your own as far as your “estate” is concerned (NOTE: if you are attending college and remain a dependent, some of these issues may not apply). First, consider a durable power of attorney. This document allows you to name someone to manage your property for you if you become incapacitated, and it can be someone other than your parents, if state law does not impeded that choice. Then, develop an advanced medical directive such as a living will, a durable power of attorney for health care (also known as a health-care proxy), and a “Do Not Resuscitate” order. Depending upon your residence, some states may or may not allow all the above medical directives. Check with your state’s laws to discover how you can manage your life if you become incapacitated.
  • Are you young and single? If you are under age 25 and still unattached, you may not need elaborate estate planning. But, if you own material possessions, you can help those you leave behind with how to manage those possessions. If you don’t leave a will, most often your possessions will go to your parents, and that may be ok with you. If not, then decide how you want to distribute your belongings if you meet an untimely death.
  • Are you part of an unmarried couple? States vary when it comes to how they view your commitment to another person, especially if you aren’t married. A will, in this case, is essential if you want your property to pass to your partner at death. Without a will, your partner may be left out in the cold, as only your closest relatives may recieve your estate. If you own property such as a house or a car, you might consider owning the property jointly. That way, if one of you dies, the jointly-held property will pass to the surviving partner automatically.
  • Are you married? In the U.S., married couples are treated as one economic unit for federal gift tax and estate tax purposes – as long as each spouse is a U.S. citizen. If you or your spouse dies, the unlimited marital deduction allows your or your spouse to give or leave the entire estate to the surviving spouse tax free. This deduction is especially important since the passage of the Economic Growth and Tax Relief Reconciliation Act of 2001 (the 2001 Tax Act [PDF]) which has increased the exclusion amount (as described in a following section). Married couples also might consider creating a bypass or credit shelter trust.
  • Are you married with children? Children alter estate planning drastically, as you and your spouse should choose guardians in the case that both of you are incapacitated or if you die simultaneously while those children are underage. Without a will, the court can name a guarding for your minor children.You can choose a guardian and add this directive in your will. Additionally, separate wills allow for spousal support if that spouse survives. In some states, without a will, some of your property may go to your children and not to your spouse. Married couples with children may want to consult an attorney and a financial planner to allow for many different circumstances that may occur while the children are minors. A life insurance policy, for instance, will allow a spouse to support the family when your earnings cease.
  • Looking at retirement? If you are wise about attending to your estate, you’ll look at retirement plans in your 30s. At this time, retirement and estate planning can overlap as you plan to care for yourself during retirement as well as care for your beneficiaries after your death. Many options are available to those who are comfortable with their income and savings; however, financial situations always change. So, be a visionary when you plan for both a retirement and for your estate, as you may be wealthier or less wealthy in the future.
  • Are you wealthy? Depending upon the size of your estate, you may need to be concerned over estate taxes – unless you decide to die in 2010. That one year, estate and gift taxes are fully repealed. However, in 2011, estate taxes return to their 2002 levels, which may reach a fifty-percent tax rate. More than ever, wealthier individuals need to keep one eye on policy changes with a new presidential administration in Jaunary 2009. Changes made during this administration may alter your established estate plans. A will is necessary, and you may consider trusts or other financial documents that will distribute your wealth according to your wishes after you die.
  • Are you elderly or ill? If you are elderly or extremely ill, your chances of dying are higher. In this case you’ll want to write or update a will, consider a revocable living trust and make sure you have designated a durable power of attorney and a health-care directive.

In all cases, talk with your family about your wishes before you create or alter documents. Make sure they have copies of your important papers or make sure they know where to locate them. If you decide to keep them in a safety-deposit box, make keys for yourself and for a power of attorney. This way, if you are subject to an accidental death, your wishes can be met without a hitch.

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How to Donate Your Body to Science

Wednesday, November 19th, 2008

Body DonationsIf you’ve ever watched CSI (Crime Scene Investigation) on television or if you’ve heard rumors about body farms and – yes – body snatching, then it’s time to set records straight. Donating a body to science isn’t as morbid or as mysterious as it sounds. If your religious beliefs allow you to think about this after-life option, here are some tips on how and why body donations might make sense:

  1. First, begin by searching for an accredited tissue or body bank. Currently, tissue banks do not need to meet accreditation standards, so an organization that seeks accreditation may be a sign of a company that promises respect for your remains and for your family’s wishes.
  2. You can find accredited organizations through the American Association of Tissue Banks (AATB). Beginning in 1986, the AATB initiated a mandatory Accreditation Program for its institutional members to ensure that tissue-banking activities are performed in a professional manner in compliance with these their established standards. This group sets the ethical guidelines for the recovery of body cells and tissues in a way that is respectful to the donor and that donor’s family.
  3. Another option would be to choose a local medical school or university. No matter which organization you choose, they send a packet of forms to fill out along with documentation about policies and procedures.
  4. Most tissue banks want to know answers to medical questions, and some may want a complete medical history. The reason for these questions is that you can be turned down for donation. Unfortunately, people who have HIV/AIDS, a history of hepatitis B and/or C, tuberculosis and syphilis cannot donate their bodies to science. You also cannot be accepted for donation if you are obese or if a coroner has already performed an autopsy. There are no upper age limits in donation of a human body to medical science.
  5. Once you decide on a tissue bank and they accept your application, you – and possibly a family member – can fill out consent forms. The organization you choose sends out a donor card at this point, so that others know that you’ve donated your body or – as an option – your organs to science.
  6. Finally, let family members and loved ones know about your decision. When you donate your body to science, there is no need for family members to contact a coroner. Instead, most tissue banks inform you that – along with the authorities – they need to be contacted as soon as possible after your death so they can arrange to transport your body to the proper facility.

Questions to Ask

  1. In many cases, your donation to science is free, but some tissue banks charge for body transportation fees. Under no circumstance should you expect to be paid to donate your body to science, as that is an illegal practice.
  2. Some tissue banks cremate your remains and bury them at no cost to the family. Other tissue banks return cremated remains if the family desires. Time allocated for the cremation and burial options usually run from three to five weeks. With that said, some ‘projects’ that use body tissue may take from three to five years to complete. In most cases, no matter the time frame, the family usually prepares a memorial service to help the survivors to honor a death so that the time involved with the body donation doesn’t interfere with current burial traditions.
  3. Cremation is the only option for remains after tissue donation, as tissue harvesting is disfiguring. You – and, in some cases, your family – must be comfortable with this option.
  4. You can ask how your body (or organs) might be used. Be prepared for some unusual answers (see next section).
  5. Organ donations and whole body donations are two separate programs. You, as a potential donor, must make the decision based upon the difference. With very few exceptions, a whole body donation is impossible when organs are donated. The only exception is the donation of an eye cornea, which can be donated without affecting the body donation.
  6. There is no absolute security that you can avoid the cost of a burial with a body donation program. Many bodies have been rejected at death for various reasons, including death by infectious disease. So, you might want to prepare an alternate burial plan to spare your family the chore and expense.

Why Body Donation is Important

  1. If you are of the mind that you want to help advance medicine, cures for cancer and neurological disorders, new treatment for Alzheimer’s, less invasive surgical methods for brain tumors and new insights into criminal investigations, then a body donation to science is up your alley. There is a major shortage of human tissue in this country, and many advancements are impeded by that shortage.
  2. Surgeons also need real-life operating experiences, as do firefighters and paramedics. So, be prepared, if you ask about the future of your remains, to be presented with some unusual situations. In most cases, unfortunately, you cannot request that your body be used for a specific purpose.
  3. Some of these situations include learning how bodies react to rot, crash tests for automobiles, testing for protective military equipment and other experimental techniques. Before your mind wanders too far, remember that the organization that is accredited has promised to respect your body and your family’s wishes. With that said, also remember that you cannot request a specific use for your remains.
  4. No matter if you consider yourself to be charitable or stingy in life. In death, the donation of your remains to science is the ultimate altruistic act, as it allows many scientists, medical personnel and volunteers learn how to save others.

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What Do Dying People Need?

Tuesday, November 18th, 2008

What Dying People Need

One of my aunts died last year, and – fortunately – my uncle was willing to talk about her death. I learned from him how she viewed her world as she was dying. I also learned about what she needed to leave this world in peace.

Although the information below was specific to my aunt, some items in this list probably are universal. And, although she didn’t die suddenly and had time to finalize many wishes, this list can serve as a reminder that many individuals do die suddenly, with little time to accomplish goals. Therefore, this list can serve as a template for anyone who wants to leave a promising legacy.

  • Settling Finances: If you’ve been frugal during your life, this goal might not be difficult to accomplish. If your finances are in disarray, you might take a look at how you can straighten them out so that you don’t leave behind problems for loved ones. Find a financial adviser to help you with your goals, and learn more about how to leave money to your beneficiaries. The best time to accomplish this task is when you’re feeling healthy.
  • Find an Advocate: My aunt’s husband was her advocate, as he was able to represent her to her doctors and hospice care workers when she couldn’t represent herself. The advocate needs to know your wishes for treatment, how you want to end your days and to talk for you if you are unable to communicate. This person will enable you to manage any pain, to support you at the end of life and to help you die with dignity.
  • Establish an Ethical Will: In an ethical will, you can say how and where you want to die, and under certain medical circumstances. This will enables your advocate to argue your case with doctors and even with lawyers. In this will, you can describe your funeral (which you can pay for in advance) and leave last messages (your financial will manages your bequeaths).
  • Ignorance is Not Bliss: My uncle and his wife learned everything they could about her illness so they could prepare for the future. He went so far as to learn about the signs of death from her hospice care so he could recognize when the end of her life was imminent. To say that this made the end of her life that much more intimate to them both would be an understatement.
  • Make Amends: My aunt was feisty. There were some people she could forgive…and forget totally. Some people aren’t that lucky. If you have battles that keep you awake at night, you might want to settle them now. If you’ve hurt others and you know about it, ask them how that hurt can be healed. If others have hurt you, talk with them about it and be gracious in your responses. The point is to leave this life with dignity and in peace.
  • Reach Out: Professionals are available to help you and your family members talk about death and dying. These guides can be found in funeral homes, hospices, psychology offices, churches and hospitals. They have been trained to know what the dying person needs, including hope, faith and encouragement within the context of the situation, lessons about stress and grief management. Death, no matter if sudden or slow, is a powerful tool that can be wielded by the dying and mismanaged by the family. Guides can help to cut through barriers to help those who want to move past the anger and sadness that can permeate their lives.
  • Safety and Support: A dying person can feel very vulnerable, and safe environments are tantamount to their well-being. These environments are physical, but they also can be emotional and psychological – they need to feel safe to discuss sensitive issues and to reveal raw emotions with loved ones and with others. Some cancer patients and their families, for instance, can find solace in groups filled with individuals with similar illnesses.
  • Physical Care: My aunt, even in the last stages of her illness, wanted to feel “whole” and strong. She would take walks and try to keep up with chores and her daily routines. Her husband knew not to interfere. When she became bedridden, she finally allowed him to take on her part of the work. Part of her insistence in carrying on “as usual” was to face death with pride. On the other hand, physical activity helped her to maintain a positive attitude, as these activities helped her to avoid thinking about the end of her life.

When my aunt did become bedridden, my uncle stopped everything except the daily arrival of the hospice caretakers. My aunt wanted to die at home with her husband, and everyone respected her wishes. My uncle stayed by her side for three nights and days until she died.

My uncle is doing well today. I have no doubt that he has his sad moments, but I believe that the steps that he and his wife took to help her transition from life to death helped them both to face this trial with pride and love. I hope they help you as well.

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