Advocacy Groups

New Federal Rules Will Require Home Health Agencies To Do Much More For Patients healthcare blog credited to Judith Graham and Kaiser Health News

Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.

The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.

They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.

Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.

The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.

While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.

“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).

Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.

Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.

Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:


Patient-Centered Care

In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.

Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.

“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.

While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.


Patient Rights

For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.

Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.

.A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.

NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.


Caregiver Involvement

For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.

Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.

“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.


Plans Of Care

Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.

“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.

In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.


Discharge Protections

Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.

The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.

“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”


For more information on Kaiser Health News, please visit our web page at:

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. 

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.

Advocacy Groups

For Seniors, Teeth Need Care — But Insurance Coverage Is Rare healthcare blog credited to Michelle Andrews and Kaiser Health News

Aging can take a toll on teeth, and for many seniors paying for dental services is a serious concern because they can’t rely on their Medicare coverage.

Low-income seniors, in particular, are struggling. More than a third with incomes below 200 percent of the federal poverty level (about $23,000 annually) had untreated tooth decay between 2011 and 2014, according to an analysis of federal data by the American Dental Association.

“What ends up happening is that almost everybody, when they get to be 65, is sort of on their own and they have to pay for dental care out of pocket,” said Dr. Michael Helgeson, chief executive officer of Apple Tree Dental. Apple Tree is a Minneapolis-based nonprofit organization operating eight clinics in Minnesota and California that target underserved seniors, as well as mobile units that provide on-site dental care at nursing homes and other facilities.


Traditional Medicare doesn’t usually cover dental care unless it’s related to services received in a hospital. Medicare Advantage managed care plans generally provide some dental care, but the coverage can vary, and often is minimal, dental advocates say. The plans often are “a loss leader,” said Dr. Judith Jones, a professor of dentistry at Boston University. “It’s meant to attract people. It gets people in but the coverage is really limited.”

In a way, older people are victims of dentistry’s success. Regular visits to the dentist, along with daily tooth brushing and water fluoridation, have all contributed to improvements in oral health. In the first half of the 20th century, by the time people reached their 30s or 40s many had already lost all their teeth, Helgeson said, while today more than 60 percent of people in nursing homes still have at least one tooth.

But teeth need tending. Without regular dental care, tooth problems can cause pain and limit how much and what type of food people are able to eat. Similarly, gum disease can loosen teeth and allow bacteria to enter the body. A growing body of research has linked treating periodontal disease with lower medical costs for diabetes and heart disease, among other conditions.

People’s lives are affected in other ways by their oral health. “You use your mouth to eat and kiss and smile and interact socially,” said Jones. “It’s a source of great embarrassment and suffering for many adults without access to care.”

With limited income and no insurance, seniors may skip visiting the dentist regularly, even though many report that their mouths are dry and painful, and they have difficulty biting and chewing, not to mention avoiding smiling and social interaction if they have missing or damaged teeth.

Medicaid, the state-federal program for lower income people, covers dental care for children in every state, but coverage for adults is much spottier. Most states cover emergency dental care, but eight states offer no adult dental benefits at all, according to a study by Oral Health America, an advocacy group.

Even trying to purchase private dental insurance, which typically covers a few thousand dollars worth of dental care, may not provide good value, said Marko Vujicic, vice president of the American Dental Association’s Health Policy Institute. “When you add up the premiums and copays, for the vast majority of adults it’s not worthwhile to have dental insurance,” he said.

Seniors with traditional Medicare spent $737 on average out-of-pocket on dental care in 2012, said Tricia Neuman, director of the Program on Medicare Policy at the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

But the figures may be much higher for people who need major restorative work.

“I know people who are spending sometimes more than $10,000 on what they consider essential dental care, like implants, none of which is covered,” Neuman said.

Seniors with limited means have few options for help affording dental care. Federally qualified health centers may provide geriatric dental services on a sliding-fee scale, and clinics like Apple Tree help a limited number of seniors who live in their service area. But they’re a band-aid, said Jones.

She and other advocates want Medicare to add a dental benefit to Medicare Part B. Their proposal would provide a basic bundle of diagnostic and preventive services through a premium increase, and seniors would only be responsible for copayments if they need pricey restorative work like crowns and bridges.

“Over the years, there has been some interest in expanding Medicare to include dental coverage,” Neuman said. But a dental benefit has faced stiff competition from other priorities, including adding a prescription drug benefit in 2006 and preventive coverage under the health law in 2010.

But some people think this time might be different. “There are 250,000 people every month who are turning 65, and 30 percent of dentists say they could use more business,” said Beth Truett, president and CEO of Oral Health America, which supports the proposal. “It’s a perfect storm.”

KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

Please visit to send comments or ideas for future topics for the Insuring Your Health column.


For more information on Kaiser Health News, please visit our web page at:

Advocacy Groups
New Haven

Police need help ID'ing elderly man, in hospital more than a month. He was found at the Philadelphia International Airport and suffers from suffers from advanced dementia and other ailments.

Blog credited to PHILADELPHIA (WTXF) - Police are asking for your help identifying the man in this picture, as they look for his family and/or caregivers

Philadelphia police say more than a month ago, back on March 14, he was brought from Philadelphia International Airport to Methodist Hospital, where they admitted him.

He has still not been identified.

Police say he suffers from advanced dementia and other ailments.

He only speaks Spanish, but cannot talk about himself, or communicate biographical information.

He is described as an Hispanic man, 80-85 years old, weighing 100 lbs., with brown eyes and gray balding hair.

Anyone with information on this man is asked to contact the department’s South Detective Division at 215-686-3013, or call 911.

Advocacy Groups

How to Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away’ healthcare blog credited to Judith Graham and Kaiser Health News


Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most — more than cancer, stroke or heart disease.

The rhetoric surrounding Alzheimer’s reflects this. People “fade away” and are tragically “robbed of their identities” as this incurable condition progresses, we’re told time and again.

Yet, a sizable body of research suggests this Alzheimer’s narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages.

They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.

“Do our abilities change? Yes. But inside we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.

Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way: “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”

“I’ve learned something from this,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’

“But I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”

The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.

“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.

Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.

Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:


Focus On Health

One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.

Those discussions emphasized the importance of physical health: being free from pain, well-fed, physically active and well-groomed, having continence needs met, being equipped with glasses and hearing aids and not being overmedicated. Cognitive health was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.

Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.


Foster Social Connections

Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.

But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.

“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.


Adapt Communication

Not knowing how to communicate with someone with dementia is a common problem.

Laura Gitlin, a dementia researcher and director of The Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: Speak slowly, simply and calmly, make one or two points at a time, allow someone sufficient time to respond, avoid the use of negative words, don’t argue, eliminate noise and distraction, make eye contact but don’t stare, and express affection by smiling, holding hands or giving a hug.

Also, understand that people with dementia perceive things differently.

“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”


Address Unmet Needs

Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.

Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet, 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).


Respect Autonomy And Individuality

Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this “being seen as a whole person, not as my disease.”

At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.

In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.

None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that “improved quality of life should be a primary outcome of all dementia treatments.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.


KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and coverage of aging and long-term care issues is supported by The SCAN Foundation.

For more information on Kaiser Health News, please visit our web page at:

  • Kaiser Health News
    1330 G St. NW
    Washington, DC 20005
    (202) 347-5270
Advocacy Groups
Washington, DC

ADVANCE CARE PLANNING WORKSHOP: FREE PUBLIC EVENT · HOSTED BY "YOUR END OF LIFE DOULA" on Thursday May 4, 2017 from 5:30 PM to 7:30 PM. Located at The Guilford Community Center 32 Church Street Guilford, Connecticut 06437

Advance Care Planning Workshop - Free Public Event - Hosted by "Your End Of Life Doula" on Thursday  May 4, 2017 from 5:30 PM - 7:30 PM 

LOCATION:  The Guilford Community Center 32 Church Street  Guilford, Connecticut 06437


This event is being hosted to start "the conversation" by adult children with aging parents or for the parents to start the conversation with their adult children. 

We offer education and checklists for helping you get started. 

Please invite anyone you think will benefit from a discussion on advance care planning.

Join us for information on Advance Care Planning. 

* What is advance care planning?
* How do you document your future  
healthcare decisions?
* Why is planning ahead important?
* Why must you have "the conversation" 
with loved ones?

Event sponsored by Your End of Life Doula and Cartier & Bower. 

For additional information, please contact Patti Urban at or (203) 689-7004.

Advocacy Groups
Zip code: 
New Haven
start time: 
Thursday, May 4, 2017 - 5:30pm

Shoreline Area Senior Network monthly breakfast meeting on Wednesday, April 26, 2017 from 8:00 am to 9:30 am. Located at The Hearth at Gardenside 173 Alps Road Branford, CT 06405 (203) 208-3718

Please join us for the monthly breakfast meeting of the 

Shoreline Area Senior Network!

(RSVP Required -- See Below)

DATE & TIME: Wednesday   April 26, 2017 from  8 - 9:30 AM

LOCATION:  The Hearth at Gardenside 173 Alps Road Branford, CT  06405 (203) 208-3718 




Sage Solutions LLC

Home Instead Guilford 


Rachel Blundon Klein
Madison Earth Care


Garden Therapy
Gardening is a viable therapeutic tool for many populations but is especially useful in working with seniors.  It is used to strengthen emotional, social, cognitive, and physical abilities in seniors, and there are many modifications that can be utilized to allow people of all abilities to participate.  Learn why gardening with seniors is not just an enjoyable activity, but has real benefits.


You must RSVP so we can be sure to have enough breakfast items.  Please respond by clicking the RSVP Button below by no later than Monday, April 24, 2017.



The Shoreline Area Senior Network (SASN) meets on the 4th Wednesday of each month from 8 to 9:30 AM at various locations throughout the Connecticut Shoreline.

This Network is a venue for professionals who work with older adults.  The main focus of the group is to educate professionals with the latest information and updated legislation to better serve the older adult population.

However, sharing of referrals and networking with trusted individuals are also a primary focus of the Shoreline Area Senior Network.

To be added to our mailing list, please send an email to



Cindy Cartier, Cartier & Bower

Jennifer Jones, Kindred

Molly Standley, VNA

Marcia Turner,  YEA LLC

Patti Urban,  Comfort Keepers


 There will be a marketing table at each meeting.  Feel free to utilize the opportunity to place information, events, brochures, etc. on the table.  Everyone but Sponsors may place their information here.  After the meeting, please take your remaining brochures with you. 

Only Sponsors may place info on each person's seat as well as give a short talk 
(maximum 2 minutes) about their business.  

Advocacy Groups
Zip code: 
New Haven
start time: 
Wednesday, April 26, 2017 - 8:00am

National Healthcare Decisions Day April 16, 2017: Start the conversation



National Healthcare Decisions Day educates and empowers the public and healthcare providers to take part in important advance care planning.

Emphasizing the spotlight on the importance of advance directives, National Healthcare Decisions Day, is a collaborative effort of national, state and community organizations. Together these entities work to ensure that the information, opportunity and access needed to document health care decisions is available to all decision-making capable adult citizens of United States.

Whether you are a physician, patient or concerned family member, healthcare decision-making can be a difficult topic to discuss.

April 16 is National Healthcare Decisions Day (NHDD). Fancy name. Important topic.

The purpose of NHDD is to help people across the United States understand the value of advance care healthcare planning. One of the biggest barriers to achieving this is fear. Who likes to talk about death? How do you even bring it up? Won’t you offend people or, if you’re clinician, maybe offend your patients?

Advance care planning is not about death. It allows you (or your patients, if you’re a clinician) to think about and make decisions about the care people would want to receive if they become unable to speak. The word “death” is not even in the definition.

National Healthcare Decisions day, a time to raise awareness about the importance of advance care plans. Sometimes called an advance directive or living will, an advance care plan is a way to plan ahead for your medical care in case you cannot make your wishes known.

This kind of planning:

  • Can be made at any time in your life.
  • Gives you and your loved ones peace of mind.
  • Helps prevent questions, confusion, and disagreements among family members.
  • Advises health care providers what you want if you are unable to speak for yourself.

A lack of planning has personal and economic consequences:

  • Family members may not know what you want and whether they are "doing the right thing" on your behalf.
  • Getting care you didn't want can lead to unnecessary medical expenses for treatment, hospital stays, and nursing homes.

Woman writing with pen

Put your care preferences in writing using an advance care form.

Think, Communicate, Decide, and Document

To create an advance care plan:

  • Think about your wishes and preferences regarding health care while you are able.
  • Talk with family members about your wishes and preferences.
  • Decide who will be responsible for making decisions if you cannot.
  • Most importantly, put your preferences in writing using an advance care form.

For more information on this important topic visit:

Advocacy Groups

Coming Full Circle, Doulas Cradle The Dying healthcare blog credited to Bruce Horovitz  and Kaiser Health News

As Ellen Gutenstein lay in her bed at home, dying from lung cancer that had metastasized in her brain, a heart-wrenching Mother’s Day card arrived from her granddaughter. Neither Ellen’s daughter — nor her husband — felt they could read it to her without breaking down.

Fortunately, a volunteer from the local hospice’s doula program was on hand to help the then-77-year-old resident of Ridgewood, N.J., comfortably die at home. She picked up the letter and read it with compassion.

“I’m not sure I could have done that,” said Lisa Silvershein, the daughter who helped arrange a more comfortable end-of-life experience for her mom in 2014. “The doula not only made my mom’s life easier — she made our lives easier, too.”

Doulas, an ancient Greek term that loosely means a woman helping another woman, have long comforted women during birthing. But the definition has broadened, and doula programs — a combination of male and female volunteers and paid certified staff — are increasingly helping elderly patients fulfill wishes to die at home rather than in hospitals or nursing homes.

End-of-life doula specialists are now in at least a half-dozen states, including New York, Colorado and Texas, said Henry Fersko-Weiss, executive director of the International End of Life Doula Association, which he co-founded in 2015. A social worker with hospice experience, he first came across the idea 15 years ago, when a birth doula told him that she was also offering comfort to the dying.

“I thought to myself: Oh my God, this is exactly what we should be doing at end of life,” said Fersko-Weiss, who has since authored a book, “Caring for the Dying: The Doula Approach to a Meaningful Death.”

From left: Ellen Gutenstein; her daughter, Lisa; and her granddaughter, Emma, at the Gutenstein’s 55th wedding anniversary. (Courtesy of the Gutenstein family)

In 2003, he set up what he says was the nation’s first end-of-life doula company to train people to care for the dying. Fersko-Weiss helped create the doula program at Valley Home Care in Paramus, N.J., which assisted the Gutenstein family.

The doula association trains and certifies professional end-of-life doulas. Certification requires 22 hours of classes that cost about $600 for those who hope to make a career of it. Volunteer doulas complete 18 hours of training, with costs typically paid by a sponsoring hospital or hospice.

“Nobody should die alone,” said Ellen Rand, a longtime hospice volunteer, blogger and health journalist. Finding a doula is a proactive step for families facing terminal illnesses. “I’ve never come across anyone who has done too much end-of-life planning — it’s usually just the opposite,” she said.

The end-of-life doula movement is supported by the National Hospice and Palliative Care Organization. “As long as they go through a training process, I think they can complement the work of the hospice team really well,” said John Mastrojohn III, the organization’s executive vice president. “The more people there to help a patient and family the better.”

While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They often help the dying reflect on life’s meaning.  They conduct comforting rituals, including light touch and holding hands. They will read to patients or play favorite music. Doulas also explain signs and symptoms of dying to the family and help them know what’s coming next.

“We work as a team with doulas,” says Bonnie Schneider, manager of social services at Valley Home Care, part of the Valley Health System, which oversaw Gutenstein’s care. Its volunteer doulas must be trained, go through criminal background checks and health screenings and offer three written references.

Shortly after Gutenstein, a Valley Hospice volunteer, was diagnosed with incurable cancer, the hospice connected her with Fersko-Weiss.

“To be honest, we weren’t sure if an end-of-life doula would work for us,” said Silvershein. “But we finally decided, what the heck, let’s give it a shot.”

It turned out to be just what the family needed. In her final days, approximately eight different doula volunteers assisted Gutenstein and her family, with one always by her side.

“They ended up making our lives easier — and hers,” said Gutenstein’s husband, Bob. “All along, the doulas helped us to know what to expect next — which is something most of us didn’t know.”

The doula not only made my mom’s life easier — she made our lives easier, too.

Lisa Silvershein

This included planning for Gutenstein’s final days, which the doula association refers to as “the vigil.” The doulas helped create a “vigil plan,” which detailed who should be in the room at her death and the sounds and smells she wanted around her.

Early on, Gutenstein’s volunteer doulas recommended that the family assemble a memory book. “My mom loved the idea,” recalled Silvershein. The book featured photos, letters, writings and illustrations.

The doulas frequently read the memory book to Ellen because they saw how happy it made her.

When family needed time away from Ellen’s bedside, the doulas frequently talked, read or sang to her. One doula sang Ellen’s favorite song: “Over the Rainbow.”

There are things end-of-life doulas can’t do — at least in most hospital or hospice settings. Because they aren’t nurses, they aren’t typically permitted to physically care for patients — whether it’s changing bandages or giving them medications. But in private homes, doulas and families agree on acceptable tasks, said Fersko-Weiss.

They can do light massage, or they might brush teeth and help a primary caregiver change a patient’s clothes and bedding, said Fersko-Weiss. Doulas also can help caregivers reposition someone in bed or apply cold compresses if fever spikes.

Unlike home health aides, end-of-life doulas are trained in emotional and spiritual care — not just physical care, said Fersko-Weiss.

Ellen and Bob Gutenstein dance at their 55th wedding anniversary celebration. (Courtesy of the Gutenstein family)

Perhaps the most important thing doulas did for the Gutensteins was to constantly make everyone in the room — particularly Ellen — more comfortable.  “It was the doula who kept her positive,” said Bob Gutenstein.

Doulas give family members time to sleep, which can improve their decision-making. “The last few days, the doulas were there around the clock, which was really helpful for me,” said Silvershein.

The best way to find a volunteer end-of-life doula is via a patient’s local hospital or hospice, said Fersko-Weiss. But volunteers typically have limited availability.

To find paid doulas, his association intends to post a list on its website with contact information for member doulas across the country. Until then, Fersko-Weiss suggested directly contacting his group’s website at

Trained and certified non-volunteer doulas cost $40 to $100 per hour, Fersko-Weiss said. Some charge flat rates for initial visits and during a dying patient’s final days, when round-the-clock vigilance is often needed. Costs for that end-stage service typically range from $1,200 to $4,000, he said.

At the moment, medical insurance does not cover paid doula services, said Fersko-Weiss. But just as some insurance companies are starting to offer partial reimbursements for birth doulas, he predicts that families may eventually receive some reimbursements for end-of-life doulas.

Gutenstein’s doulas were volunteers, and the family later showed its thanks by giving a substantial donation to the hospital’s doula unit.

Knowing what they know now, said Bob Gutenstein, they would have happily paid for the services if volunteers were not available. It was, after all, the doulas who recognized and alerted both Lisa and Bob that Ellen’s death was imminent.

“We wouldn’t have had this confirmation without them,” Silvershein said.

It gave Bob — who had been dozing at his wife’s bedside — his final moments with his wife, which he might have otherwise missed. After the doula alerted him to Ellen’s last breaths, “I reached over, and she gave me a squeeze,” said Bob, “and then, she was gone.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

For more information on Kaiser Health News, please visit our web page at:

Advocacy Groups
New Jersey
New Haven

Care Decisions CT: The goal of Care Decisions CT is to improve palliative/hospice care and quality of life for persons in Connecticut with serious illnesses.


Care Decisions Connecticut was created by the Connecticut Hospital Association, in collaboration with healthcare partners across the continuum of care and state government.  The goal of Care Decisions Connecticut is to integrate patient-directed care strategies to improve palliative/hospice care and quality of life for persons in Connecticut with serious illnesses. 

This site provides resources for providers and the public.

The Care Decisions Connecticut Advisory Group comprises representatives from the following organizations:

American Cancer Society – New England Division, Inc.
Anthem Blue Cross and Blue Shield of Connecticut
Apple Rehab
Bridgeport Hospital
Bristol Hospital
Bristol Hospital Home Care Agency & Hospice
ConnectiCare, Inc.
CT Association for Healthcare at Home
Connecticut Children's Medical Center
Connecticut Hospital Association
Connecticut State Medical Society
CT Center for Patient Safety
CT Coalition to Improve End-of-Life Care
Connecticut Department of Social Services
Danbury Hospital
Day Kimball Hospital
Connecticut Department of Public Health
Eastern Connecticut Health Network
Genesis HealthCare System
Greenwich Hospital
Griffin Hospital
Hartford Hospital
The Charlotte Hungerford Hospital
Lawrence + Memorial Hospital
LeadingAge Connecticut
Middlesex Hospital
Norwalk Hospital
Regional Hospice and Home Care of Western Connecticut
Saint Mary's Hospital
St. Vincent's Medical Center
Seasons Hospice and Palliative Care
Trinity Health - New England
VITAS Healthcare

Contact us by:

Phone:  (203) 265-7611

Email:  @CareDecisionsCT


For more information please visit our web page at:

or Facebook page at:

Advocacy Groups

Connecticut's 2-1-1 is a convenient connection for local services and resources including support groups! Dial 2-1-1


Call 2-1-1


Send Message


Simply by dialing 2-1-1, a toll-free number throughout Connecticut, callers can reach knowledgeable, multilingual staff and get information, referrals or seek help in a crisis.

General Information

2-1-1 is Connecticut’s free information and referral service. Simply by dialing 2-1-1, a toll-free number throughout Connecticut, callers can reach knowledgeable, multilingual staff and get information, referrals or seek help in a crisis. 2-1-1 operates 24 hours a day, every day of the year. TDD access is available. United Way of Connecticut provides these services with support from the State of Connecticut and local United Ways.

Support Groups

People experiencing life problems and challenges are often helped by participating in a support group. Members of support groups share their experiences, strengths, and hopes and rely on one another for emotional support, information and resources. Support groups exist for a wide variety of illnesses, disabilities, addictions, bereavement, parenting and many other stressful life problems.


  • Professionally-facilitated groups
  • Structured Christian-oriented groups
  • Online
  • Secular 12 step models with or without professional participation
  • Groups that use a set of guidelines prepared by a national organization or headquarters
  • Groups that have no professional participation or specifically-structured format


Search by service names: 

  • Adoption and Foster/Kinship Care Support Groups
  • Aging/Older Adult Support Groups
  • Alcohol Dependency Support Groups
  • General Bereavement Support Groups
  • Caregiver/Care Receiver Support Groups
  • Child Abuse Support Groups
  • Computer/Video Game Addiction Support Group
  • Debt/Overspending Support Groups
  • Domestic Violence Support Groups
  • Drug Dependency Support Groups
  • Families/Friends of Alcoholics Support Groups
  • Families/Friends of Drug Abusers Support Groups
  • Gambling Support Groups
  • Gay/Lesbian/Bisexual/Transgender Support Groups
  • General Addictions/Dependencies Support Groups
  • Health/Disability Related Support Groups
  • Kinship Caregiver Support Groups
  • Mental Health Related Support Groups
  • Military Family Support Groups
  • Parent Support Groups
  • Pet Loss Support Groups
  • Pregnancy/Childbirth Support Groups
  • Separation/Divorce Support Groups
  • Sexual Assault/Incest Support Groups
  • Sexual/Love Addiction Support Groups
  • Suicide Survivors Support Groups
  • Weight Related Support Groups
  • Widow/Widower Support Groups
  • Women’s Support Groups
  • Youth/Student Support Groups
Advocacy Groups
New Haven