Useful Websites for Difficult Choices: Care at Home, Assisted Living, Nursing Homes, and Hospice

Useful Websites for Difficult Choices: Care at Home, Assisted Living, Nursing Homes, and Hospice

Prepared by:

THE LAW OFFICE OF WILLIAM J. BRISK

1340 Centre Street, Suite 205

Newton Center, MA 02459

(617) 244-4373

Often the most important decisions have to be made at times when we are the least prepared to make them. When negotiating end-of-life care for a fragile loved one, many factors come into consideration. The choices can be overwhelming, and overall the decisions that need to be made are intensely personal and oftentimes laden with emotion.

In light of these issues, students of a course taught at SuffolkLawSchool by William J. Brisk researched comprehensive on-line references of palliative care options from assisted living to hospice care. Ideally, end-of-life care can be administered in a holistic fashion, addressing the psychological, physical, and spiritual needs of the patient in an atmosphere conducive to family involvement and the enjoyment of each and every day.

Assisted Living

Sponsored by the American Health Care Association and the NationalCenter for Assisted Living, perhaps this site’s most useful feature is the “Care Interpreter” link, a free decision-support tool that allows you to find the best living options for a parent or loved one based on specific personal and health needs. Users can also search for a facility based on location, payment type, residence/facility type, and other factors.

The Massachusetts Assisted Living Facilites Association (MASS-ALFA) website provides functionality with comprehensive coverage of the information that is typically distributed concerning assisted living facilities. It provides a vast amount of information including:

detailed maps of “residences” in seven regions of MA
glossary of terms to help navigate the publications available on assisted living facilities
10 principles to guide the consumer in selecting an assisted living facility
recommendations for payment options for assisted living

AARP’s resources for individuals seeking information on assisted living facilities include the following links:

Assisted Living Facility Evaluation Checklist
Assisted Living: Weighing the Options
What is Assisted Living Housing?

General/Informational

Designed to provide users “access to the Internet’s most comprehensive collection of reviewed resources for end-of-life care,” this site is directed towards educating the public through books and educational materials. The website supports blogs, and attempts to educate the public and educators on certain issues such as palliative care, grief, hospice care and the like. This site serves as a “first step” in educating oneself about issues surrounding end-of-life care and living with a loved on who is dying. The site emphasizes the importance of psychological stresses in end-of-life care.

Betterending.org is the website of the Central Massachusetts Partnership to Improve Care at the End of Life. An organization whose primary goal is to help people prepare for the end of life and make their final wishes known, the site provides free downloadable materials, including health care proxies and a “Personal Wishes Statement.” Betterending.org advocates proactive planning of end-of-life decisions before health crises, and offers volunteer speakers to community groups and other organizations that want to learn more about advanced care planning.

The End of Life/Palliative Education Resource Center is an educationally focused site that provides information on end-of-life care to educators and clinicians. The “Fast Facts: section provides downloadable documents on issues ranging from clinical intervention in terminal cases to pain management for the patient and the impact of a terminal diagnosis on the patient’s family. Some interesting topics include: “Confronting Personal Mortality,” “Is it Grief or Depression?” and “What Do I Tell the Children?” Overall, the site reinforces a more patient-centered approach to end-of-life care throughout the dying process.

A useful site that provides a variety of free resources on topics including:

Advance care planning
Care-giving
Pain
Financial Issues
Hospice and palliative care
Grief and loss

A toll-free helpline is available to people looking for end-of-life information,

including free brochures and advance directives or contact information for a hospice or other end-of-life organization. Free Consumer Publications are available that address issues ranging from care-giving to grief and loss.

Hopsice

(National Hospice Foundation)

NHPCO is an acronym for the National Hospice and Palliative Care Organization, the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The site is directed toward both care providers and the public, with information about creating a patient-and-family-centered approach to care, guides and checklists to be used throughout the process of establishing and providing care, education of consumers on hospice care and a search feature designed to locate member providers based on location, organization information, and service options.

Easy to negotiate, this site provides information broad and educational in nature. It lists conferences and educational seminars available to the public, defines the roles of individual hospice team members, and clarifies the types of care included under the term “hospice.”

This website is limited in terms of information offered to the general public, but membership can be obtained by giving the user’s name and email address. To get full value from this resource, we recommend that the user become a member.

The Beacon Hospice, Inc. is an organization of hospices that has offices in Massachusetts, New Hampshire, Maine, Rhode Island, and Connecticut. The website describes their commitment to providing quality end-of-life care and dedication to creating “higher standards of care.” It also provides links to ongoing bereavement support groups within the five states that the Beacon Hospice serves.

The mission of the Hospice Care association is to improve hospice and palliative care mainly in developing countries around the world. The site provides much insight on free-standing hospices, including their intended purpose and general standards to look for when differentiating and choosing between them. Some of the listed standards include: whether there are diagnostic or pharmacy units, the storage and administration of medications, staffing of units (i.e. number of nurses, doctors, and social workers), how many beds per units and the number of patients with given illnesses that can be treated per unit.

The Hospice Foundation of America (HFA) believes that “hospice is not a place but a concept of care.” Its site places primary emphasis on this philosophy, prioritizing means through which to maintain a patient’s residence in their home, while presenting alternative options such as a family member’s home. The HFA believes nursing home placement should be considered only as a last resort. The website also highlights a “Hospice Myths and Facts” section refuting commonly held misconceptions of hospice care such as “families should be isolated from a dying patient” and that “a hospice is for patients only when there is ‘nothing else to be done.’ ” The HFA seeks to not only provide information about hospice care but also to focus on the continued education of professionals about the benefits and applications of hospice care.

Primarily geared toward individuals seriously considering hospice care for either themselves or a loved one, this site explores topics such as the patient’s view of hospice care, the family’s view of hospice care, hospice care bill of rights, and addresses the five W’s of hospice:

Who is eligible?
When is it time?
Why hospice?
Where is hospice?
What makes hospice care unique?

Homecare

This site supports caregivers of ill or disabled persons, by listing accessible services and funding options and explaining how to cope with stresses. A message board, available on the site, allows caregivers to share information among themselves.

The American Cancer Society sponsors cancer.org, which provides a section that addresses several questions and concerns related to home care agencies. The page has several links related to in-home hospice care, but three are especially helpful.

1. “What Should I Ask When Choosing a Home Care Provider?” – lists various questions to ask each provider and details in depth what each response should be.

2. “What Do I Do About Quality of Care Complaints?” – explains what can be done to enforce patients’ rights against in-home care providers.

“How Can I Find a Home Care Agency?” – provides various methods for finding Medicare-qualified in-home care agencies. This link also provides lists and links to individual state resources.

The mission of the Homewatch CareGivers is to “preserve dignity, protect independence, and provide peace of mine for clients and their family caregivers, by providing exceptional care to maintain clients’ quality of life in their own homes.” Their site helps the user learn about payment options, since the organization is a provider and therefore able to fully explain the types of payment options accepted by a typical long-term care provider. The payment sections of the site discuss Medicare, long-term care insurance, and provides a link to which assists individuals in applying for additional benefits to pay for long-term care.

Visiting Angels is the nation’s leading, nationally respected network of non-medical, private duty home care agencies providing senior care, elder care, personal care, respite care and companion care to help both adults and elderly continue to live in their homes. The network develops individualized programs to manage daily needs through discussions with involved family members, consultation with physicians of care recipient, social workers, hospitals, or nursing home staff.

Careextension.com is a Boston based company dedicated to helping families across the U.S. find the quality care that they require. This site serves as a referral source for care-givers dedicated to providing senior care. By filling in a short questionnaire, careextension.com will match a user to an appropriate care provider in the area, free-of-chare.

The Home care Alliance of Massachusetts is a non-profit trade association whose self-described mission is to “unite people and organizations in the advancement of community health through care and services in the home.” The site provides information both to patients (and/or their families) considering home care and to those providing home care.

The patient and family are provided with a series of short articles on areas of concern such as: choosing a home care provider, paying for home care and finding a home care agency. In addition, the public may view up-coming educational events held by the Alliance, search jobs in the home health field and read about the Alliance’s goals and mission.

Nursing Home

The National Care Planning Council sponsors this site, which encompasses a broad range of long-term care issues and services, from saving for the future to dealing with the need for care, to planning for funerals and burials. The site also includes articles about determining when long-term care is necessary and discusses the likely benefits of long-term care insurance.

Sponsored by the National Institute on Aging, this site focuses on choosing the right place for long-term care. It is directed to individuals of all ages, and provides an easy-to-read overview and guide to long-term care. Beginning with the scenario of an elderly man who can no longer take good care of himself but does not wish to move in with his family, the article stresses the importance of discussing and planning options in advance. The website then explains the two types of senior living facilities- assisted living facilities and skilled nursing facilities or nursing homes- and how they differ based on the amount of care they provide. Also addressed are ways through which to go about choosing a facility, including asking questions, consulting with the state long-term care ombudsman or possibly the Department of Veteran’s Affairs, and contacting, visiting, and evaluating different facilities. In addition, the site provides a list of other resources about long-term care for seniors.

A U.S. government sponsored website, this site offers a search engine for every nursing home in the United States. The search tool allows people to search by geography, proximity, and name. Once users specify their search criteria the site provides a comparative list of applicable nursing homes. Information included includes information on Medicare and Medicaid participation, the number of beds at the facility, the type of ownership, whether the nursing home is located within a hospital, whether the facility is part of a multi-home ownership and whether the facility provides resident and/or family councils. The user is also presented with an opportunity to select a specific nursing home to view resident information pertinent to that facility. All statistics and facts are based on government assessments, so the user can be certain that the information received is unbiased.

Paying for Care

Sponsored by America’s Health Insurance Plans (AHIP), a “national association representing nearly 1,300 member companies” which sell health insurance “to more than 200 million Americans,” healthdecisions.org links to current articles discussing long-term care and the need for long-term care insurance. The site contains links that include either a citations of sources or lead directly to the sources themselves. The user can also search for long-term care insurance providers by state, group size, product types (i.e., nursing home, long-term care partnership, etc.)

The Long-Term Care Financial Partner’s site is a free long-term care insurance quote site. The user enters his/her information and then one [or more] of the sponsoring insurance companies responds to the inquiry to discuss individual options. This site offers compelling arguments in favor of long-term care insurance, but the user should bear in mind that the LTCFP is a sponsor site on Google, (meaning it pays to be placed at the top of the page when certain key words are searched.) Concurrently, whatever assistance the site provides should be measured against the knowledge that it also serves as a paid advertisement for the insurance industry.