Posts Tagged ‘deathcare’

25 Top Hospice, Death Care and Eldercare Blogs

Friday, August 21st, 2009

Portrait of old woman sitting by a window by Chalmers Butterfield.

Portrait of old woman sitting by a window by Chalmers Butterfield.

Are you seeking expert advice on how to work with an elderly parent? Do you want to find information about your own aging? Many experts, including lawyers, hospice nurses and nursing home advocates, have taken to the Web to offer their advice and knowledge through the following up-to-date blogs. Their information may be what you need to answer your questions about aging, deathcare and eldercare.

The following list of hospice and eldercare blogs are listed in alphabetical order to show readers that we do not favor one blog over another:

  1. AARP: Can’t live with out AARP if you are age 50 or older. This site provides advocacy, information, resources and even a game section. It’s more of a portal than a blog, but it’s a raging good resource.
  2. About.com Palliative Care: This site is designed for patients, families, and caregivers who are faced with life-threatening illness and are seeking information about palliative care or hospice.
  3. Caregiver List: This blog focuses on resources for caregivers for the elderly.
  4. Death Care Law Blog: William Stalter focuses his law practice on preneed and death care compliance, serving banks, funeral homes, crematories, and cemeteries.  He has written multiple published articles on the subject of preneed and is a member of The International Cemetery, Cremation Funeral Association.
  5. Dethmama Chronicles: This hospice nurse is off the charts – funny, intense, philosophical and nurturing, she provides an insider’s perspective into death care.
  6. Eldercare ABC Blog:If it requires a village to raise a child, then what does it take to care for an aging parent? This blog tries to answer that question with a myriad of resources.
  7. Eldercare Diary: This site is more of a portal than a blog, but it does contain a blog as well as a forum, articles and resource directory.
  8. ElderCare Expert Blog: “Dr. Cheryl” is an owner of a Geriatric Care Management business in Southern California, and she offers information on eldercare advocacy and information for caregivers and for eldercare professionals.
  9. GeriPal – A Geriatrics and Palliative Care Blog: This blog is a forum for discourse, recent news and research, and freethinking commentary. They welcome the perspectives of generalists, specialists, gerontologists, palliative care clinicians, and anyone else interested in care of the elderly or palliative care.
  10. Hospice Blog: This blog is dedicated to all of the hard working hospice professionals across the nation.
  11. Hospice and Caregiving Blog: Sponsored by the Hospice Foundation of America, this blog offers stories and articles about the end-of-life experience.
  12. Hospice and Nursing Homes Blog: Frances Parker is a consultant, hospice volunteer and former school principle, and her blog focuses on Parker’s experiences and knowledge about hospice care.
  13. Hospice Physician’s Blog: This fellowship-trained and board-certified hospice and palliative medicine physician shares insights into patient experiences from a hospice and palliative care point of view.
  14. How We Die: Ok, so this is not a blog – but, it’s a “can’t miss” site that may hold you spellbound. The founders explore how our most personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The site welcomes stories from patients, their families, loved ones and friends, and doctors and healthcare professionals.
  15. Inside Eldercare: One man’s mission – to educate and inspire readers to make their elder care experience a positive. Ryan is the creator of the “by families, for families” approach to elder care which teaches families how to make elder care a positive experience.
  16. Lasting Tribute: This blog celebrates the lives of family, friends and people in the public eye who are no longer with us. It also allows members of the public to leave their own personal messages and upload photos.
  17. Medical Futility Blog: Thaddeus Pope tracks judicial, legislative, policy, and academic developments concerning medical futility and the limits on individual autonomy at the end of life.
  18. My Better Nursing Home: Dr. Eleanor Barbera frequently lectures on subjects related to psychology, aging, and nursing homes. Read her blog to gain insight into those topics.
  19. My Elder Advocate: Jack Halpern has held several key leadership roles during his 30 years in the nursing home industry, and he shares his current perspectives on eldercare with readers.
  20. Palliative Care Success: Tim Cousonis is a certified health care executive who has worked for the past 20 years to improve end-of-life care in the U.S.
  21. Pallimed: This blog is a hospice and palliative medicine blog that focuses on education about the hospice movement and industry.
  22. Risa’s pieces: This blogger is a palliative care provider who writes about his experiences with death and dying individuals.
  23. The Good Death: Jessica Knapp is a PhD student and freelance writer who wants to help people better handle all facets of death and dying. Her posts are filled with facts, questions and many links to other resources.
  24. The New Old Age: This New York Times’ blog focuses on Baby Boomers who face the challenge of parents who are living longer.
  25. The Nursing Home Administrator: Learn more about nursing home matters from Matthew Maupin, who writes about topics ranging from diseases to tech tools.

Tags: , , ,
Posted in Caregivers, Death & Dying, Grief and Grieving, Hospice, Hospice Basics, Patients, Traditions | 2 Comments »

New Reports: Caregivers, Doctors and Patients on Dying

Thursday, June 18th, 2009

Nearly two-thirds of Americans [PDF] believe the law should empower terminally-ill, competent patients to choose how they will end their lives. Yet, the AMA’s (American Medical Association) outspoken opposition to aid in dying has been cited by the Supreme Court and influences lower courts, state medical societies, and most important, legislatures.

The AMA claims to speak for doctors, and the media often echo that assertion, yet barely a quarter of the nation’s physicians are AMA members. Many medical and public health organizations have policies that support aid in dying, including the American Medical Women’s Association, the American Medical Student Association, the American College of Legal Medicine and the American Public Health Association. Still, according to a study recently conducted by Georgetown University Hospital, nurses, doctors and patients all feel some frustration, fear and abandonment during the end-of-life cycle for a patient in a hospital setting.

Nurses, in particular, who completed an End-of-Life Nurse Consortium Course, were asked about their training. Surprisingly, about 52 percent of nurses in the study said they never received this training, yet 43 percent reported they had been involved in one to three end-of-life situations within the previous six months.

Over 100 nurses attended the course, and while survey results are still pending, there have been some changes. All newly-hired nurses at the hospital now receive the training, and all of inpatient oncology and hematology nurses are required to take the end-of-life training course. The study found nurses that receive end-of-life education and training can positively impact the lives of patients and families facing difficult times, according to the report at WFTV. According to the news story:

Another study shows patients who are dying and their families report that feelings of abandonment by their physicians at the end-of-life have two components: a loss of continuity of care before death and a lack of closure near death or afterward. “Early on, patients and family caregivers fear that their physician, whose expertise and caring they have come to depend on, will become unavailable,” the authors write. Most physicians are not consciously aware of having abandoned their patients. Instead, they report lack of closure or a feeling of unfinished business. The report could help physicians structure care to maintain the professional value of non-abandonment, including use of non-hospice palliative care or closure-promoting communication strategies involving nurses and other members of the health care team. As end-of-life approaches, physicians should offer assurances that they’ll still be available and should maintain contact with the patient and caregiver, according to Anthony Back, M.D., of the Seattle Cancer Care Alliance, and colleagues.

Interestingly, patients with advanced cancer who discuss end-of-life care with their physicians appear to have lower health care costs in the final week of life than those who do not, according to a report in the Archives of Internal Medicine. Formal and informal caregivers who were interviewed after the patients’ deaths reported that those with higher costs also had a worse quality of death in their final week.

Tags: , , , ,
Posted in Caregivers, Death & Dying, Death Practices, Hospice, Patients | No Comments »

Changing the Language of Death

Monday, April 27th, 2009

With the waxing popularity of hospice care for end-of-lfe support and health care, many hospitals, hospice or palliative care services and nursing homes are changing the language of death. In one specific incident, this language has changed from one of a negative connotation with a harsh reality to that of a positive tone and a natural process.

For years, do not resuscitate, or DNR, has been the designation for not prolonging life when a person’s heart stops beating or breathing stops. A new designation, allow natural death, or AND, is becoming the preferred term among some entities, including several hospitals within Lutheran Health Network.

Proponents of the AND designation say it creates for patients and medical staff a more positive approach. It is about what is allowed to occur as opposed to what is not to be done.

Sister Carole Langhauser, vice president of Mission Integration at St. Joseph Hospital. St. Joseph and Dupont Hospitals stated that this change is more than semantics – it’s a philosophy. After all, not one person escapes death, so why make it a negative experience for the dying and their loved ones?

Langhauser said physicians are embracing AND over DNR. A 2004 Hastings Center Report compared real-life accounts of two families dealing with end-of-life decisions. The family that was offered the option of signing DNR for a loved one in the event of cardiac arrest became upset and agitated. Another family facing the same dilemma but who was given the “allow natural death” option reported a better understanding of the option and the fact their loved one would be appropriately cared for.

If you’ve thought about your own death, how do you feel about the DNR? Would you want to put that onus on someone else if you were incapable of making a decision? Or, would you rather die a natural death in words, with those words imparting a philosophy to your loved ones that death is a natural part of life?

Either way, it’s the same process. The only difference is how it is worded.

Tags: , , , , ,
Posted in Death & Dying | No Comments »

Uneasy About Embalming

Thursday, April 16th, 2009

Embalming, as an art and a practice, began in ancient Egypt as mummification, and has grown throughout the centuries to become a necessity at times, a blasphemy to some and a horror to others. Embalming, in most modern cultures, is the art and science of temporarily preserving human remains to forestall decomposition and to make them suitable for display at a funeral. According to Wikipedia:

“Contemporary embalming methods advanced markedly during the American Civil War, which once again involved many servicemen dying far from home, and their family wishing them returned for local burial. Dr. Thomas Holmes received a commission from the Army Medical Corps to embalm the corpses of dead Union officers to return to their families. Military authorities also permitted private embalmers to work in military-controlled areas.”

While the Wikipedia entry marks the American Civil War as a time of great advancement in embalming, this practice still had a long way to go. Arsenic often was used as embalming fluid, which was later found to contaminate groundwater. And, it wasn’t until 1867, two years after the end of that war, that the German chemist August Wilhelm von Hofmann discovered formaldehyde, whose preservative properties were soon discovered and which became the foundation for modern methods of embalming.

In fact, embalmers often had a nasty reputation among northerners and southerners during the American Civil War. The following account is from the book, This Republic of Suffering: Death and the American Civil War,” by Drew Gilpin Faust:

The U.S. Army was deluged with anguished protests from families of dead soldiers who believed they had been cheated by embalmers operating near the battlefront. An officer at City Point, Virginia, protested to Inspector James A. Hardie in 1864 that “scarcely a week passes that I do not receive complaints against one or another of these embalmers…[They] are regarded by the medical department of the army generally as an unmitigated nuisance…the whole systems as practiced here is one of pretension, swindling, and extortion.” In 1863, a case was lodged against Hutton & Williams, “EMBALMERS OF THE DEAD” in Washington. Hutton was imprisoned and the company’s records were seized. The suit alleged that the pair regularly recovered and embalmed soldiers without permission and then demanded payment from grieving families, threatening to disinter or refuse to return the bodies of their conditions were not met.

In the fall of 1864 Timothy Dwight of New York pursued a grievance with secretary of war Stanton against Dr. Richard Burr, a prominent Washington embalmer, claiming that Burr was guilty of extortion for preying upon him in his distress after “the loss of a most excellent Boy.” Burr defended his fee of one hundred dollars to the provost marshal, saying his employees has risked their lives recovering the body from near the picket line and then carrying it several hundred yards under fire. He had then disinfected the body “by means of my embalming fluid and charcoal” and enclosed it in a zinc coffin, sealed it, and shipped it – clearly warranting, he insisted, his charges. On January 9, 1865, General Ulysses Grant responded to the chorus of grievances by withdrawing all embalmers’ permits and ordering them beyond the lines. The distances separating the dead and their loved ones nevertheless continued to encourage embalming, in spite of great uneasiness about the practice and widespread hostility toward its practitioners.

If you feel uneasy about embalming, remember this: Regardless of whether embalming is performed, the type of burial or entombment, and the materials used – such as wood or metal caskets and vaults – the body of the deceased eventually decomposes. Modern embalming is done to delay decomposition so that funeral services may take place or for the purpose of shipping the remains to a distant place for disposition. Many states do not require embalming to take place if the body is not traveling a long distance, but the body must be buried within a certain time frame if you decide to bypass this process.

Tags: , , , ,
Posted in Death & Dying, Funeral Arrangements, History of Funerals, Traditions | 2 Comments »

Online Asset Management before Death

Monday, March 16th, 2009

What happens to Web assets when you die?

Many topics about death care cover tangible items such as hospice, health, burials and funerals. And, almost everyone concerned with a death also is concerned with wills and asset management. Tangible assets include homes, property and other things you can touch and see. But, what happens to a person’s Web assets when they die?The BBC touched on this subject in 2004, Forbes in 2006, and TechRadar picked it up in 2008. Another blogger touched on the subject of email last year as well. They all ask the questions, ”What happens to all this Web stuff when you die?”

If you purchased domain names, Web hosting and other online “properties” such as memberships, then you have assets that may be worth money. If you own an online business, or if you have integrated an online presence with a bricks-and-mortar business, then you should take these assets into account. Don’t leave a mess for your loved ones, especially if your online information is private or worth some cash.

Things change over time, and these changes include laws that pertain to copyright, online information and access to that information if you do not own it. So, we’ve compiled a list that we hope will remain pertinent for a few years. If you own online assets and you follow the tips listed below, then your successors might appreciate you even more after death. Even better, this list might help you organize your life for better efficiency now:

  • The BBC article listed three Websites that might have helped folks with death care management back in 2004. However, only one of those three Web sites mentioned in that article remain viable today. If you want to use online mediums to account for your Web presence, you might also include actual paperwork in a will in case that Web site dies and takes your information with it.
  • The key word above is “will.” If you don’t have a will, make one now. And, if your online assets change over time, then you can either change your will or add a codicil, or supplement, to that will.
  • Name an executor and make sure that person has total access to your death documents, including online access (user names and passwords), once you die. Some sites may remain online forever until they are deleted. Other sites may shut down the site as soon as a monthly or weekly payment has not been met. It’s important to point to those latter sites so the executor can pay to attend to them immediately upon your death.
  • Pay attention to terms of service (TOS) for each site, hosting service or memberhips, as they may change. Additionally, you may learn that, even though your executor has your information, it may be illegal for that person to enter your site. When possible, print out the TOS and attach your user name and password to that TOS along with any special instructions. You can alter these items at any time, as long as you include them with your will and other death care documents.
  • Clean up your life…if you don’t want certain emails or documents read after your death, then why are you holding on to them? If it’s a matter of legal liability, then print them out, back them up on a disk, and forward them to an email address that will hold personal or sensitive items.
  • Social media sites, for all intents and purposes, are you – and few people will want those sites once you’re gone (unless you’re famous). With that said, if you have photographs, videos or other personal assets on those sites, then think about using other sites to hold that information. Then, your assets will be organized for easier handling once you’re gone.
  • You also can create a ‘plan of action’ for your social media sites if you die. In some cases, those sites contain many people you’d want to notify about your death. If legally possible, your executor can manage this plan.
  • In many cases, hosting services will eliminate your account upon your death unless an executor notifies that hosting service and transfers your domain within a year. This time frame barely provides enough time for probate and a sale or transfer, but it must be done if that Web site or blog needs to be maintained as part of a business or other venture.
  • If you want your online ‘goods’ such as photos, content and more, to be sold or transferred upon your death, then you might pick a beneficiary who will benefit from that sale or transfer. If you own an online business, think about finding someone who can carry on that business after you die.
  • In keeping with “keeping your ducks in a row,” you might include information about traffic, online income and other pertinent information about your sites so that your sites will be ready for sale when you die. You can learn more about what people want when they purchase a site at Sitepoint.com.
  • Finally, read the other articles mentioned above. Other than the viability of Web sites in those articles, the information is valuable. Some information is contradictory between articles, so that should give you a heads up that information does change over time. Use that information, this list and your knowledge and intuition to lead you down the path that’s right for you and your loved ones.

You may learn that your online assets are worth more than your tangible assets with this exercise. If so, seek the advice of a knowledgeable attorney to guide you through a legacy process. While professional advice may cost you some money on the front end, the money your successors may save (or make) could be worth your efforts.

Tags: , , , , ,
Posted in Death Care News, Estate Planning, Other Legal Matters, Wills & Estate Planning | 1 Comment »

Your Hospice Rights

Monday, February 9th, 2009

Your Hospice RightsIf you are considering hospice care for yourself or a loved one, you might want to know about Hospice Patients Alliance (HPA). This group was formed in August 1998 as a non-profit means to serve the U.S. public with health care rights in a hospice situation. HPA was founded by nurse Ron Panzer, and the group was formed by hospice staff and health care professionals who felt that some patients were not receiving adequate death care during the end-of-life cycle.

HPA promotes quality care whether a patient is enrolled in a licensed hospice or not, whether residing at home or in a facility. HPA is rare in that it is one of the very few true “watchdog” advocacy groups that truly serves hospice patients, families and caregivers. They are dedicated to promoting the welfare of the hospice patients, their families and/or caregivers. No member of their Board of Directors can be an employee or administrator in any hospice Agency or hospice lobbying groups.

HPA can help you learn about many hospice issues. For instance, did you realize that there are four levels of required services that hospices must provide? The hospice must inform you about all these levels of care when you consider admission to hospice services. If the hospice’s “informed consent” form does not list the following four levels of care, think carefully about whether you want to use their services.

A hospice that provides the following levels of care and lists them clearly in their “informed consent” form is more likely to provide the required services, especially if your request them and remind the hospice that you have this service ‘in writing.’

  1. Routine Home Care: Routine home care includes case manager visits, social worker visits, access to a chaplain, counselors, dietitian, therapy and more. Additionally, you have access to 24-hour hospice-registered nurses who can answer your questions. These services are part of the “hospice benefit” reimbursed by Medicare, Medicaid or private insurance.
  2. Continuous Nursing Care at Home: If you choose to stay at home for death care, continuous around-the-clock nursing care in your own home is your right if the you (as the patient) or the your loved one is having symptoms which are “out of control.” According to HPA, “This standard of care applies whether you reside in your own home in the community, a foster care home, assisted living facility, apartment or even a nursing home…all of these locations are considered ‘your own home.’” However, the patient cannot be forced into a facility if the patient wants to remain at home.
  3. Inpatient Care Level of Services: If your loved one is already residing at home or in a hospice facility and the symptoms become uncontrolled, you can inquire about placing the patient on “In Patient Level of Services” so that he or she can get the special attention required. In some instances, the patient may be temporarily placed in an acute care hospital (transferred from home) if there is no hospice facility.
  4. Respite Level of Care: If the family needs a break with taking care of an in-home patient, respite care is there to save the day. The patient, if willing, is temporarily placed in a facility up to five days so that the family can get rest from the seemingly never-ending list of things to do which are part of the patient care routine. After that time, the patient is transferred back home.

If you want to learn more about your hospice rights and even more about deathcare management, be sure to visit the HPA site. Their resources are numerous and helpful to anyone who is considering the ability to die at home.

Tags: , , , , ,
Posted in Hospice, Hospice Basics | No Comments »