Posts Tagged ‘Palliative care’

Some Terms to Define Advance Directives

Friday, September 25th, 2009

Learn more about advance directives

Learn more about advance directives

The following definitions are used by the American Hospital Association to define terms used in and about advance directives. These terms, which are part of a brochure provided to help patients, families and the hospitals that serve them, presents key resources to enhance educational efforts and to raise awareness around the important issue of advance directives.

Learn more about advance directives, get your questions answered and find more links that talk about this end-of-life planning at the American Hospital Association site, Put It In Writing.

  • Advance Directive: A document in which a person either states choices for medical treatment or designates who should make treatment choices if the person should lose decision-making capacity. The term can also include oral statements by the patient.
  • Artificial Nutrition and Hydration: A method of delivering a chemically-balanced mix of nutrients and fluids when a patient is unable to eat or drink. The patient may be fed through a tube inserted directly into the stomach, a tube put through the nose and throat into the stomach, or an intravenous tube.
  • Cardiopulmonary resuscitation (CPR): A medical procedure, often involving external chest compression, administration of drugs, and electric shock, used to restore the heartbeat at the time of a cardiac arrest.
  • Decision-Making Capacity: The ability to make choices that reflect an understanding and appreciation of the nature and consequences of one’s actions.
  • Declaration: One type of advance directive, commonly referred to as a living will.
  • DNR: Do Not Resuscitate; a medical order to refrain from cardiopulmonary resuscitation if a patient’s heart stops beating.
  • Durable Power of Attorney for Health Care (DPOA): An advance directive in which an individual names someone else (the “agent” or “proxy”) to make health care decisions in the event the individual becomes unable to make them. The DPOA can also include instructions about specific possible choices to be made.
  • Hospice: A program that provides care for the terminally ill in the form of pain relief, counseling, and custodial care, either at home or in a facility.
  • Legal Guardian: A person charged (usually by court appointment) with the power and duty of taking care of and managing the property and rights of another person who is considered incapable of administering his or her own affairs.
  • Life-Sustaining Treatment: A medical intervention administered to a patient that prolongs life and delays death.
  • Palliative Care: Medical interventions intended to alleviate suffering, discomfort, and dysfunction but not to cure (such as pain medication or treatment of an annoying infection).
  • Persistent Vegetative State: As defined by the American Academy of Neurology, “a form of eyes-open permanent unconsciousness in which the patient has periods of wakefulness and physiologic sleep/ wake cycles but at no time is aware of himself or his environment.”
  • Proxy: A person appointed to make decisions for someone else, as in a durable power of attorney for health care (also called a surrogate or agent).
  • Terminal Condition: In most states, a status that is incurable or irreversible and in which death will occur within a short time. There is no precise, universally accepted definition of “a short time,” but in general it is considered to be less than one year.
  • Ventilator: A machine that moves air into the lungs for a patient who is unable to breathe naturally.

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.

Rockefeller’s Bill to Improve End-of-Life Care

Monday, June 8th, 2009

Senators John D. (Jay) Rockefeller IV (D-WV ) and Susan Collins (R-ME) reintroduced a more expansive, comprehensive version of their Advance Planning and Compassionate Care Act (S. 1150) with Senators Herb Kohl (D-WI), Ron Wyden (D-OR) and Tom Carper (D-DE) as original cosponsors.

“Death is a very personal and complicated issue that we all must confront one day. We have an obligation to help the sick maintain dignity and proper care for as long as possible,” said Senator Rockefeller, Chairman of the Senate Finance Subcommittee on Health Care. “Our efforts on health care reform must include improvements to end-of-life care. Far too often, patients, their families, and their health care providers do not have the information needed to make educated decisions about their options. We must make sure that patients’ final wishes are known, respected, and complied with – always.”

The Advance Planning and Compassionate Care Act of 2009 would:

  • Improve consumer information about advance care planning and end-of-life care. This legislation would provide critically needed information and assistance to consumers and their families in order to guarantee that an individual’s final wishes for care are carried out.
  • Improve provider education and training about advance care planning and end-of-life care. This legislation would establish a National Geriatric and Palliative Care Service Corps modeled after the National Health Service Corps.
  • Require portability of advance directives. The legislation would improve the portability of advance directives from one state to another, and require any existing advance directives to be prominently placed in a patient’s medical record so they are easily visible.
  • Authorize funding for new and innovative approaches to advance care planning. Grants would be made available to states for development of electronic advance directive registries.  Grants would also be made available to develop systems to identify that a person has an advance directive using driver’s licenses, similar to how organ donor status is indicated.
  • Provide Medicare, Medicaid, and CHIP coverage for advance care planning consultations. This legislation provides Medicare, Medicaid, and CHIP coverage for advance care planning so that patients can routinely talk to their physicians about their wishes for end-of-life care.
  • Improve consumer access to hospice and palliative care. This legislation provides greater consumer information about hospice and palliative care, so the public is well informed of the care options available at the end of life.
  • Provide concurrent care for children. This legislation requires that concurrent care – the provision of both curative and hospice care at the same time – is available to children who qualify for hospice.  This will make it possible for children to receive the palliative services they need from hospice while still pursuing potentially curative treatments.
  • Require the development of quality measures to assess end-of-life care. The Secretary of HHS, acting through the Director of the Agency for Healthcare Research and Quality, shall require specific end-of-life care quality measures for each relevant provider setting. The legislation would also develop and implement accreditation standards and processes for hospital-based palliative care teams. 
  • Establish the National Center on Palliative and End-of-Life Care at the NIH. Biomedical and health services research is vital across all phases of life. A new National Center on Palliative and End-of-Life Care at the NIH will lead biomedical research on palliative and end-of-life care.

This bill has been read twice as of 21 May 2009 and has been referred to the Committee on Finance.

How You Can Help Your Local Hospice

Sunday, June 7th, 2009

NHF (National Hospice Foundation) supports the National Hospice and Palliative Care Organization’s quality and research initiatives, hospice/palliative care provider education activities, consumer engagement and caregiver services and global hospice partnerships.

While many people do not know that Medicare can pay for hospice care, Medicare cannot spread the word about hospice or palliative care services like local outreach. And, Medicare Part A cannot pay for custodial care.

You can visit your local hospice and offer your services to help patients. If you do not like dealing directly with death care or patients, perhaps you can help organize a fundraiser to help raise awareness about local hospice facilities. Or, you can take a look at what some other people are doing to help make the transition from life to death easier for others. All the events listed below occurred in 2009:

  • Beautiful weather helped to draw a big crowd for the 8th annual Walk for Hospice in Albany, New York on Saturday, 6 June. According to the news story, the event raised about $115,000.
  • Hundreds of motorcyclists (including one 62-year-old Harley lady) will ride to rise money for the first Ride for Hospice of Hamilton, which will benefit the nonprofit agency’s indigent fund that ensures uninsured and underinsured terminally ill patients receive care. This ride took place today, 7 June.
  • The annual St. Catherine’s Hospice ball, held on Saturday night, 6 June, in the UK, attracted 400 guests and has raised about £20,000 for funds.
  • Hospice of Marshall County in Alabama received a $25,000 donation from Larry Fortenberry on behalf of the SpringBash ‘09 on Thursday. 4 June. This was the second year for the SpringBash and Fortenberry, the director, said he was already working on improving it for next year.
  • Cora Goyette learned Hospice of Orleans County, New York, needed special bed linens and gowns for Hospice patients. Hospice loans hospital beds and mattresses to patients, but regular-size linens do not properly fit a hospital bed. So, Cora started a Comfort Fund she calls, “Making a Difference, One Bed at a Time.” She contacted all the emergency services personnel in Orleans County – fire chiefs, veterans organizations and police agencies – and asked them if they would each donate $50 to the Comfort Fund. “As a result, we have been able to purchase gowns and linens for our patients,” Goyette said.
  • Thom Gill has become somewhat of a fixture at Hospice Home at High Point, North Carolina. Twice a week, the 57-year-old High Point man shows up with his Michael Kelly resonator guitar, takes his spot across from the nurses’ station and serenades the patients and staff with his laid-back acoustic music. This is a lovely story, and one that may stir your heart to help your local hospice!

More People Know about Photography than Hospice Care

Sunday, June 7th, 2009

When the photography exhibit “The Art of Caring” opened on May 16 at the New Orleans Museum of Art (NOMA), the National Hospice Foundation was proud to be present as a “Caring Partner” for the section on “Remembering.”

The show captures life’s milestones through the lenses of a diverse group of contemporary photographers, some very well known (such as Annie Leibovitz) and some emerging artists. The exhibit contained seven parts, each depicting an aspect of the physical or emotional process of human life: wellness, caregiving and healing, children and family, aging, love, disaster, and remembrance.

The exhibit’s public opening featured an “Afternoon Focus on Hospice” that was organized by Jamey Boudreaux, executive director of the Louisiana-Mississippi Hospice and Palliative Care Association. This event gave exhibit attendees the opportunity to meet with hospice professionals and learn about community end-of-life care resources, but also provided a visual glimpse into the special care that hospice provides. Images created by children who had experienced the death, and photographs from the Louisiana State Penitentiary Hospice at Angola, which Boudreaux was instrumental in establishing, were shown.

According to NOMA:

In today’s interconnected world, photography is more a part of our everyday lives than ever before. Only a few years ago, bringing a camera with you was a conscious decision and often involved fastidious planning and the transportation of cumbersome equipment that made documentation far from spontaneous. Today, most cell phone users have a camera with them at all times. Taking a photo of anyone, anything and then transmitting it effortlessly via email to one person or many has become second nature. Walking, talking, shooting, and transmitting photos are now virtually synonymous.

Yet, according to the National Hospice Foundation, most Americans don’t know what hospice is and nearly 75 percent don’t know that hospice care can be provided at home. Less than 10 percent know it provides pain relief for the terminally ill, and nearly 80 percent don’t think of it as a choice for end-of-life care, while 90 percent don’t know that Medicare pays for it.

You can use the National Hospice and Palliative Care Organization’s directory to find a hospice near you. You can learn more about how a hospice operates, whether or not you can volunteer or if you want to think about this choice for yourself or for loved ones as a choice for end-of-life care. Later, I’ll show other ways on how to get involved with a local hospice or palliative care organization.

Dying at Home: The Alternative to Hospitals

Wednesday, May 27th, 2009

Have you thought about dying at home? In the past, that’s all that our ancestors could do – provided they weren’t killed or died accidentally away from the home. In Canada, it seems that more people are choosing the option to die at home, despite free medical care at their hospitals.

According to a new study published in Social Science & Medicine, University of Alberta researcher Donna Wilson looked at mortality data of Canadians dating back to 1950. Up until 1994, 80 per cent of Canadians were choosing to pass on in a hospital bed. But since the mid-’90s there’s been a drastic change in the number of people going to hospital to die. The number is now down to 61 per cent.

“So after years of [the numbers] going up, we have completely reversed that and are now at the 1960 level, before there was free hospital care in Canada,” said Wilson, who adds the decrease in numbers of people dying in hospital has happened without direct health policy or government planning.

Her next study she wants to find out why this trend is happening. But she already has some ideas on the huge swing.

“My guess is that a lot of it has to do with the fact that death is no longer unexpected,” said Wilson. “A lot of people are dying at an advanced age and you begin to accept that fact that it’s going to happen and it [can be] a dignified event. If you take the person to the hospital . . . care is by strangers rather than family members.”

Wilson predicts the number of people dying each year will double, maybe even triple, in the next 10-20 years because of the aging baby-boomer population. And, despite the fact that the Canadian government hasn’t been involved in the stay-at-home deaths to date, Wilson would like to see more involvement and encouragement for the death-at-home option.

“We need to start putting more money in to home care and develop some hospices, have some courses for families and maybe build a few more nursing home beds,” said Wilson, who adds this not only helps the health-care system but also can provide a more dignified and potentially less painful death for the patient.

“All the drug therapies that keep people comfortable in hospital can be used at home,” said Wilson. “You’ve got much more choice. You’re not going to be force-fed; you’re not going to have an intravenous drip started on you that is painful.

“I think we have a very healthy population who can look after dying people.”

Considering the growing hospice care industry, this trend may already be active in the U.S. as well. Hospice care workers are well trained in helping the dying and their families with this life transition. Dying at home among family and friends may be a much more personal and meaningful option than dying in a hospital room amongst strangers.

New Pediatric Standards of Care for Hospices

Thursday, April 23rd, 2009

More than 1,600 hospice and palliative care leaders, managers and industry experts gathered in Washington, DC this week to discuss issues involving healthcare reform.

“Almost 30 percent of Medicare costs are for care provided during patients’ last year of life, with an estimated 30 percent of that figure covering costs in the last month of life,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization (NHPCO). “We are raising awareness of the important role hospice and palliative care should play in current debates on healthcare reform.”

While many people think of hospice care primarily for elderly persons at the end of life – 66 percent of hospice patients are over the age of 75, reports NHPCO – care for children and families facing serious illness and death also figured prominently at the National Hospice and Palliative Care Organization’s 24th Management and Leadership Conference. The group released its first set of national standards for pediatric palliative and hospice care at the opening plenary session at the Omni-Shoreham Hotel.

The Standards of Practice for Pediatric Palliative Care and Hospice was developed by NHPCO and members of the Children’s Project for Palliative/Hospice Services. The goal is to help hospice and palliative care providers develop safe, effective, and high-quality programming for children and their families facing serious and life-limiting illness.

On Wednesday, more than 400 hospice advocates went to Capitol Hill and met with legislators to emphasize the need to protect hospice reimbursement and promote access to high-quality end-of-life care for all patients and family caregivers.

“We know that hospice gives Americans the care and support they want at the end of life, and we know that hospice provides cost savings to Medicare for each beneficiary that takes advantage of hospice care. Hospice is part of the solution for healthcare reform in this country,” Schumacher noted.

Facts and figures on pediatric care and more information on the new pediatric standards is available at www.nhpco.org/pediatrics. NHPCO members may download the pediatric standards from the site free of charge. Others may purchase the pediatric standards from NHPCO’s Marketplace at 1-800-646-6460. Consumer information about hospice and palliative care is available at NHPCO’s Caring Connections Web site, www.caringinfo.org.

Medicare Part A and Hospice Care

Thursday, April 2nd, 2009

Medicare Part A is the portion of Medicare that is available premium-free to all eligible individuals. This part of Medicare benefits provides services associated with hospital, hospice, skilled nursing care and home health care. While you may have read that Medicare Part A covers all costs incurred with hospice, or palliative, care, this is not the case when it comes to custodial care.

Medicare does not cover care that is or becomes primarily custodial, such as assistance with bathing and eating.

Hospice care is death-care for a terminally-ill person, and Medicare Part A provides comprehensive coverage, at home, for symptom management and pain control. In other words, Medicare Part A will not cover custodial care, but it does cover symptom management and pain control. And, several criteria must be met before coverage is allowed as well:

  • The health-care provider must be certified by Medicare to provide hospice care
  • The patient’s doctor and the hospice care director must certify that the patient is terminally ill (i.e., has a life expectancy of six months or less)
  • The patient must elect hospice coverage for the terminal illness instead of standard Medicare benefits, although Medicare will continue to cover care provided that it is not related to the terminal illness
  • Services include nursing care, medical appliances and supplies, prescriptions, home health aide and homemaker services, medical social services, and counseling

If family members need a respite from custodial care, the family – or the patient – is responsible for that cost. The hospice may arrange for the hospice patient to be moved to an inpatient facility for up to five days at a time to provide respite to the hospice care personnel and the family. In this case, the Medicare beneficiary may be charged a nominal daily fee for the inpatient care.

When you interview a hospice service to learn about their program, ask them your questions about Medicare Part A. A professional service is experienced with this benefit and can answer your questions in detail.

Hospice Care, Funerals and Cemeteries on Twitter

Monday, March 30th, 2009

Do you use Twitter? If not, you probably wonder what the Twitter fuss is all about. If you’re using Twitter, you may think that those who don’t use it just don’t “get it.” Whether or not you use Twitter, you might be surprised to learn that this social media tool has penetrated the death care industry. And, unlike the morbid specters you think you might encounter, these folks are – well – they’re alive and ordinary, with hobbies, families and stories to tell.

We let our fingers go walking through Twellow, the Twitter “Yellow Pages” to discover death care industry folks who are using Twitter. While the numbers weren’t astronomical, we don’t doubt that these figures may change as more death care businesses realize this social media tool’s commercial potential. We only chose a few links from Twellow’s search results to provide you with a taste of what you can encounter on Twitter.

The list below is categorized under the search word we used to find these links, and the links are arranged alphabetically under those categories. This method assures our readers that we do not favor one resource over another; however, we did skip over business-to-business accounts to offer Twitter users who focus on non-industry readers.

Hospice

  1. ctsinclair: Hospice & Palliative Medicine Doctor in Kansas City. Co-editor of Pallimed, a hospice and palliative medicine blog.
  2. hvto: This is Robin Watts, founder of first hospice volunteer training online course. Learn more at Hospice Volunteer Training.
  3. MyCareManager: Edward L. De La Loza is a psychotherapist and geriatric care manager. His interests include hospice, aging and eldercare among other things. His Web site is My Family Care Manager.
  4. SanDiegoHospice: San Diego Hospice and The Institute for Palliative Medicine is a “non-profit leader in the relief of pain and suffering.” Learn more at their Web site.
  5. StAnnsHospice: This user’s name is Catherine Williams, and she is the Director of Fundraising and Communications for St Ann’s Hospice in Manchester, UK.

Funeral

  1. buryorburn: Scott Gilligan is the “Funeral Maverick,” fighting big business death. He mainly posts about his blog entries at his Web site.
  2. funeralogues: Here’s an offbeat Twitter find: One woman off-Broadway show that is a darkly comedic look at the inside of funeral homes, funeral rituals and one woman’s personal obsession with death. Visit the official Web site.
  3. funeralplanner: Funeral planning and resource guide. The Web site is called the Funeral Planning Guide.
  4. funeralqueen: This is Muneerah Warner, funeral director of Warner Funeral Home and Publisher of Funerals Today Magazine, a new publication for individuals interested in funerals and an inside look at the funeral industry
  5. Otrib: Free obituary and funeral planning help and grief support forums and chat rooms at their Web site.

Cemetery and Cemeteries

  1. cemeteryminda: Minda Powers-Douglas is a writer who digs cemeteries (”not literally”). She edits Epitaphs Magazine (The Cemetery Club is Epitaph Magazine’s online venue) and teaches workshops.
  2. CemeterySpot: Hal Stevens is an author of books about end-of-life issues and owner of Web sites that provide free online memorials and free buy/sell cemetery plot services. His main site is named, aptly, Cemetry Spot.
  3. JewishGYrabbit: Schelly Dardashti is part of an international team that writes about Jewish cemeteries, news, burial, mourning, symbols and more at the Jewish Graveyard Rabbit.
  4. RivCem: The historic Riverside Cemetery Conservancy goes online to help “preserve the past for the future.”
  5. southerngraves: ‘S. Lincecum’ is an amateur historian, avid reader, genealogist and family historian, lover of cemeteries, and scrapbooker with a Web site to prove cemetery interests.

Go ahead and give Twellow a whirl. However, if you try “green funeral,” “cremations,” “body donation” or “grief management” you won’t find one tweet (an entry made by a person who uses Twitter). But, if you’re patient for a week or so, you may discover that a business or two will fill those niches.

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.