Comforting and Compassionate End of Life Hospice Care

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Hospice care: Comforting the terminally ill

Hospice care might be an option if you or a loved one has a terminal illness. Understand how hospice care works and how to select a program. If you or a loved one has a terminal illness and you’ve exhausted all treatment options, you might consider hospice care. Find out how hospice care works and how it can provide comfort and support to you or your loved one, as well as to your family and friends.

What is hospice care?

Hospice care is for people who are nearing the end of life. Hospice care services are provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support.

Unlike other medical care, the focus of hospice care isn’t to cure the underlying disease. The goal of hospice care is to support the highest quality of life possible for whatever time remains.

Who can benefit from hospice care?

Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided for as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

Hospice care isn’t just for people who have cancer. Many people who receive hospice care have cancer, while others have heart disease, dementia, kidney failure or chronic obstructive pulmonary disease.

Enrolling in hospice care early helps patients live better and live longer. Hospice care decreases the burden on the family, decreases the family’s likelihood of having a complicated bereavement and prepares family members for their loved one’s death.

In addition, there is a unique benefit of hospice that allows a patient to be cared for at a facility for a period of time, not because the patient needs it, but because the family caregiver needs a rest in order to continue to care for his or her loved one. This is known as respite care.

Where is hospice care provided?

Most hospice care is provided at home — with a family member typically serving as the primary caregiver. However, hospice care is also available at hospitals, nursing homes, assisted living facilities and dedicated hospice facilities.

Keep in mind that no matter where hospice care is provided, sometimes it’s necessary to be admitted to a hospital. For instance, if a symptom can’t be adequately managed by the hospice care team in a home setting, a hospital stay might be needed.Who’s involved in hospice care?

If you’re not receiving hospice care at a dedicated facility, members of the hospice staff will make regular visits to your home or other setting to provide care and other services. Hospice staff is on call 24 hours a day, seven days a week.

A hospice care team typically includes:

  • Doctors. A primary care doctor and a hospice doctor or medical director will oversee your or your loved one’s care. Each patient gets to decide who his or her primary doctor will be while receiving hospice services. This can be your prior doctor or can be one of the hospice doctors.
  • Nurses. Nurses will come to your or your loved one’s home or other setting to provide care. Nurses are also responsible for coordination of the hospice care team.
  • Home health aides. Home health aides can provide extra support for routine care, such as dressing, bathing and eating.
  • Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors can provide spiritual care and guidance for the entire family.
  • Social workers. Social workers provide counseling and support. They can also provide referrals to other support systems.
  • Pharmacists. Pharmacists provide medication oversight and suggestions regarding the most effective ways to relieve symptoms.
  • Volunteers. Trained hospice volunteers offer a variety of services depending on your needs, from providing company or respite for caregivers to helping with transportation or other practical needs.
  • Other professionals. Speech, physical and occupational therapists can provide therapy, if needed.
  • Bereavement counselors. Trained bereavement counselors offer support and guidance after the death of a loved one in hospice.

How is hospice care financed?

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. While each hospice program has its own policy regarding payment for care, services are often offered based on need rather than the ability to pay. Be sure to ask about payment options before choosing a hospice program.

How do I select a hospice program?

To find out about hospice programs, talk to doctors, nurses, social workers or counselors, or contact your local or state office on aging. Consider asking friends or neighbors for advice. The National Hospice and Palliative Care Organization also offers an online provider directory.

To evaluate a hospice program, ask questions about the services offered. For example:

  • Is the hospice program Medicare certified? Is the program reviewed and licensed by the state or certified in some other way? Is the hospice program accredited by The Joint Commission?
  • Who makes up the hospice care team, and how are they trained or screened? Is the hospice medical director board certified in hospice and palliative care medicine?
  • Is the hospice program not-for-profit or for profit?
  • Does the hospice program have a dedicated pharmacist to help adjust medications?
  • What services are offered to a person who is terminally ill? How are pain and other symptoms managed?
  • How are hospice care services provided after hours?
  • How long does it take to get accepted into the hospice care program?
  • What services are offered to the family? What respite services are available for the caregiver or caregivers? What bereavement services are available?
  • Are volunteer services available?
  • If circumstances change, can services be provided in different settings? Does the hospice have contracts with local nursing homes? Is residential hospice available?
  • Are hospice costs covered by insurance or other sources, such as Medicare?

Remember, hospice stresses care over cure. The goal is to provide comfort during the final months and days of life.

By Mayo Clinic Staff


How to say good bye to someone who is dying.

5 Ways To Say Goodbye To A Dying Loved One

Losing people we love is difficult. Losing them to death is the hardest loss of all. But if you love, you’ll have loss, and that loss may be to death. Now’s as good a time as any to consider the beauty of saying goodbye.

Because the truth is, it can be beautiful. The final goodbye can be sad and poignant andlovely.

Losing a loved one to death from an illness is a process. It will leave a scar at its end but going through it propels you forward and helps you grieve. Part of that process will include saying goodbye. You will get through it a bit more easily if you maintain a mindful focus on the person you love. Concentrate on saying what you believe that person needs to hear to achieve peace. The goal of the goodbye is to leave you both in peace.

This is not the time to look inward to find the words to make yourself feel better. If you have unresolved issues you feel compelled to air, choose a time before the end to talk about those. But when saying goodbye, it’s important to say things you won’t look back on later with regret. Take time to plan and rehearse what you will say. Look into your heart to mine for the right words. These tips can help you craft the message that will do both of you the most good.

1. Don’t wait. You need not hold off until the moment of death. You may not know exactly when that will be. I said my essential goodbye to my dying father just after his terminal diagnosis. He lived six weeks more but that just gave us time to enjoy the peace we shared.

2. Don’t keep insisting the dying person will get well. You may think that’s comforting but would it be comforting to you if you knew you were dying and everyone around you kept telling you that wasn’t the case?

3. Show up. If you’re there, that speaks volumes. If you’re there holding hands or offering a massage, that’s even better. If you’re doing all that and saying lovely things, that’s best of all.

4. Humor is really okay. You can smile, you can joke. Your loved one may get some peace from knowing you’re still you, if humor has always been a part of your usual personality. Same goes for crying. It’s okay. Emotion from the heart shows you care. As a friend’s mother lay dying in a hospital, the whole family stood in a circle, put their hands together in the center, and cheered by joyously shouting her name, because that was their family tradition to support each other and mark special days.

5. Honesty isn’t always the best policy. If you have a family rift and on your mother’s death bed she asks you to promise to resolve it after she’s gone, it’s not necessary to say that hell will freeze over before you do so. Let her go with hope by saying things that promote peace. And, while it’s not easy to make this happen, if you do have difficult siblings and dysfunctional relations with them, make every effort to keep that out of sight during this goodbye. My family was so dysfunctional I wrote my book Tales From The Family Crypt about it. Try not to be us!

I said goodbye to my mother when I was 24, goodbye to my father at 39. I learned a great deal in between those losses. Suffice it to say, if I could I’d go back to my mother’s death and give her the gift of a true and loving goodbye, I would. Learn from me so you won’t have the same regret. If you’d like to read more about family relationships, please visit my blog at deborahdrezoncarroll.com.


When a Loved One Receives a Terminal Diagnosis

15 Gentle Pieces Of Advice For When Your Loved One Receives A Terminal Diagnosis
By Elizabeth Jenkins March 25, 2015, from Prevention.com

When you’re the family member or friend of someone who receives a terminal diagnosis, life as you know it can change overnight. We asked people who have been through it themselves-sometimes on multiple occasions-to share their advice for navigating these difficult times.
1. Try to live as normally as possible
If you have some time with your loved one, spend it wisely. Carole Brody Fleet, author of Widows Wear Stilettos, says that when her husband was diagnosed, “our focus was on living with ALS, not dying from it. We continued family gatherings, went out to dinner, and did as much as we were able to. Even when Mike could no longer ride his horses, his friends would take him (wheelchair and all) to the stables so that he could at least enjoy them.” When Diana Ketterman was a teenager, her father was diagnosed with a brain tumor and she found that simple activities were sometimes the best. “Catching lightning bugs and going fishing together seemed to make my dad happy,” she recalls.
2. Spread the word appropriately
“Remember that this is their diagnosis and you need to respect their wishes,” says Staci Torgeson, whose mom has Stage IV lung cancer. “Some people are very private, while others want everything up on a billboard.” Julie Lavin, a mental wellness and life coach, adds that you should ask who the patient wants you to tell, how he wants you to spread the news, and what information should be included or excluded. Brody Fleet says, “Regardless of your relationship to the patient, you must always ask permission before spreading the word, particularly on social media. They may be bombarded and overwhelmed with well-wishers-all with good intentions-but it can be a lot to absorb.”
3. Ask questions
“Don’t try to be a mind reader,” says Liz O’Donnell, whose mother died of ovarian cancer and whose father is battling Alzheimer’s. “Ask your loved one how they want to live for the rest of their life. Ask them, if they seem willing to discuss it, how they want to die. Ask them what they’re worried about,” she says. “They may want help with paperwork, finances, reaching out to people, resolving past hurts, or talking to a clergy person. They may be worried about treatments or pain management.”
4. Don’t impose your opinion.
Everyone will react to their diagnosis differently, so it’s essential to respect their wishes and not foist your own feelings upon them. Laura Sobiech, who lost her son Zach to osteosarcoma, says, “Any question or statement that starts with ‘have you tried,’ ‘you should try’ or ‘you should go,’ was not helpful. Too often people wanted to make themselves feel better by giving us ‘advice’ on how to deal with Zach’s illness.” Michelle Monroe Morton, whose best friend has been battling brain cancer for four years, says, “Don’t tell them they should or shouldn’t feel a certain way. Just acknowledge what they are saying to you.”
5. Really listen
Emily Kaplowitz, who works for The Fixler Foundation, an organization dedicated to supporting people faced with a life-threatening illness, stresses the importance of being an active listener. “Nod your head, make eye contact and smile,” she says. “Listening is about the other person, not about what you are going to say next.” Julie Loven, who cared for her grandfather after he was diagnosed with prostate cancer, says, “Allow your loved one to talk-endlessly if they want to. Remember that these are the last conversations you will have. Focus on the inflections of their speech and the funny stories they tell. This is what you’ll want to remember.” On the other hand, says O’Donnell, remember that the patient may want to sit in silence. “Let him set the pace of the conversation,” she says.
6. Laugh often
“Buy funny books. Read funny stories,” says Loven. “I took my grandfather to see the movie Dodgeball and he laughed so hard his chest shook. That’s a memory I will treasure forever.” Andrea Pauls Backman recalls one Thanksgiving when her mother, who was battling ALS, forgot her syringe for her feeding tube. “We used a clean turkey baster instead, and all had a good laugh about basting Mom for Thanksgiving.” Allen Klein, who wrote the book Learning to Laugh When You Feel Like Crying, based on his own experience after his wife’s passing, says, “Don’t necessarily force humor on a situation, but if something funny arises, laugh at it. Often, friends and family got so serious that they dragged me down even deeper than I already was.” And Mary Lee Robinson, author of The Widow or Widower Next Door, adds, “To think that you must be somber and gloomy every minute of the journey is to deny yourself some wonderful, warm, and loving memories.”
7. Provide real support
Kaplowitz, who has lost her mother and two friends, says the key to lending a hand is to be specific. “For example, say, ‘I’m free Thursday afternoon for three hours.’ It was not helpful, however, when people put the burden on us to figure it out and coordinate.” Kelly Harvey, MS, PT, CHHC, who lost both parents to cancer, says the best help is practical: “Fill the fridge, watch the kids, clean the house, walk the dogs, and run the errands. These things are profoundly more effective than a pity party.” Brody Fleet remembers when a family at her synagogue invited her daughter over for the weekend. “It gave her a break from her sad reality and just let her be a kid-something that goes by the wayside when there’s a terminal illness in the family.”
8. Discuss logistical matters
If a loved one only has a short time left to live, do what you can to help them get their affairs in order. But if the opposite is true, don’t rush the conversation. “Don’t immediately talk about funeral arrangements if they have two years to live, but don’t wait until their illness progresses so far along that they can’t be part of the decisions,” says Lavin. Harvey advises letting the patient dictate the amount of future planning-such as wills and estate matters-they are willing to discuss or able to tolerate: “Keep it all in a folder, with an agenda sheet in front, to allow the patient to review the documents at their comfort, if possible.” For example, Mallory Moss, NP, says knowing that her mother wanted to be cremated, rather than buried, was a relief, and advises others to encourage their loved ones to communicate their wishes.
9. Don’t encourage false hope
Brody Fleet stresses the importance of not downplaying the situation or creating false hope. “When you deny a terminal patient’s reality, you’re also denying them of the very real need to talk about what’s happening to them,” she says. Robinson, who lost her husband after a long battle with a circulatory disease, says you have to face reality. “Pretending that death isn’t coming to each of us is pretty foolhardy, and only makes it harder on loved ones who survive us. I am glad we talked about it; it made my decisions that much easier to bear.”
10. Create a wish list

Once the patient has accepted his diagnosis, Lavin suggests offering to help him make a wish list. “Tell them, ‘When and if you are ready, I’d love to help you come up with a list of things you’d like to do before you go. Who would you like to be with you when you do them?” Jan Berlin, PhD, who lost his wife to brain cancer and founded Heart to Heart, a caregiver support program at the Tower Cancer Research Foundation in Beverly Hills, learned that “living life to its fullest” means something different for everyone. “It may mean creating lots of social interaction, or deep conversations with only one or two close friends, or immersion in art, or time in nature,” he says.
11. Divide up the responsibilities
“Every family member isn’t cut out for every job,” says Tracee Dunblazier, who has lost her mother, father, and stepfather. “In my family, I was the spiritualist who helped my mom talk about death and afterlife, one of my sisters was the medical advocate, and my other sister took care of bills and other financial arrangements.” O’Donnell suggests keeping a list of things you need help with. “Then the next time someone asks how they can help, give them a task from the list.” Khrystal Davis, whose son Hunter is battling Spinal Muscular Atrophy Type 1, recommends enlisting the help of others to spread the word. She posts updates on a Facebook page she created, but says someone at your kids’ school or your office can get the message out to their respective communities. “You don’t want to spend your valuable time telling people the same thing over and over,” she says. Wendy Marantz Levine, who lost her sister to a degenerative neuromuscular disease, says, “When people expect calls back or constant updates, it can be overwhelming. You need to focus on the person who is sick and their immediate family, not be taking care of everyone else,” she says.
12. Touch them if they’re open to it

“Often people don’t want to touch those who look ill, but patients crave human contact,” says VJ Sleight, who has battled cancer twice herself and is a hospice volunteer. She advises visitors to ask the patient if they can hold his hand or lightly rub his back. Cathy Jones also found that wetting her mother’s dry lips and tongue, stroking her hair, and simply talking to her was worthwhile, even after her mom had become comatose. “They may not be able to see you but they may hear you, and those sensations let them know that someone who loves them is right there,” she says. Likewise, Natasha Tronstein recalls of one visit to the hospital, “I used baby wipe to give my father’s arms, legs and feet a cleansing of sorts, and massaged lotion into his limbs. He craved that touch,” she says. Harvey explains that skin-to-skin contact is incredibly healing because it “releases hormones and regulates the patient’s heart rate.”
13. Help them maintain their dignity
Berlin says, “Cancer can change the body, but the person is still there. Don’t make a big deal about what bodily functions may change as the illness progresses.” After Marantz Levine’s sister Melissa passed away, she co-founded Beauty Bus, a foundation that brings beauty treatments to ill patients. “Melissa said that getting beauty treatments while she was sick made her feel human again.” And Jones stresses the importance of treating the patient the same as before her sickness. “Don’t change their clothes, diapers or bedding with lots of people around. It’s degrading to act as though their privacy and dignity no longer matter.” She also adds that if the person is comatose in the final days, don’t have conversations about them as if they are not there. “Leave the room to have those talks,” she says. “Don’t do anything you wouldn’t do if they were coherent and part of the conversation.”
14. Don’t stay away
“I wish people hadn’t stayed away or avoided calling because they thought they were intruding,” says Tronstein, who lost her father to lung cancer just six weeks after he was diagnosed. “It’s so important to have support from all angles at times like these,” she says. Pauls Backman says, “Initially, the outpouring of support was wonderful, but as my mom’s disease progressed and got very ugly, some people got uncomfortable. Fewer and fewer people visited or called. I wish more had taken the time to write her, since she couldn’t communicate verbally.” Klein recalls, “There was a lot of support for me immediately after my wife died. But several months down the road is when the reality of the loss really settled in and I needed people the most. But friends and family, maybe thinking I was okay, went on with their lives and stopped their regular contact.”
15. Allow yourself to grieve before you attempt to heal
“The healing process is difficult and never ends,” says Loven, “but don’t ignore your feelings. Allow yourself to grieve the loss, to cry and be angry and work through the emotions.” Brody Fleet says, “Make time for grief. If you don’t, it will come back to bite you at some point.” Jodi O’Donnell-Ames, who lost her husband to ALS when he was 30, says, “Everyone heals at different times and in different ways. Be gentle with yourself and know that there is no ‘best’ way.”


Hospice Facts and Questions by National Hospice and Palliative Care Organzation

Hospice FAQs

When is the right time to ask about hospice?
Now is the best time to learn more about hospice and ask questions about what to expect from hospice services.  Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern.  This can greatly reduce stress when the time for hospice is needed.  By having these discussions in advance, patients are not forced into uncomfortable situations.  Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.

How does hospice care begin?
Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor.  Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver.  Usually, hospice care is ready to begin within a day or two of the referral.  However, in urgent situations, hospice services may begin sooner.

Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team).  For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team.   Typically, full-time registered nurses provide care to about a dozen different families.  Social workers usually work with about twice the number of patients/families as nurses.  If needed, home health aides, who provide personal care to the patient, will visit most frequently.

All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness.  The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services.  Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.

Is hospice available after hours?
Hospice care is available ‘on-call’ after the administrative office has closed, seven days a week, 24 hours a day.  Most hospices have nurses available to respond to a call for help within minutes, if necessary.  Some hospice programs have chaplains and social workers on call as well.

How does the hospice work to keep the patient comfortable?
Many patients may have pain and other serious symptoms as illness progresses.  Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress.  Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice.  Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan.  The care plan is reviewed frequently to make sure any changes and new goals are in the plan.

What role does the hospice volunteer serve?
Hospice volunteers are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, and lending emotional support and companionship to patients and family members.

Because hospice volunteers spend time in patients’ and families’ homes, each hospice program generally has an application and interview process to assure the person is right for this type of volunteer work.  In addition, hospice programs have an organized training program for their patient care volunteers.  Areas covered by these training programs often include understanding hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

Can I be cared for by hospice if I reside in a nursing facility or other type of long-term care facility?
Hospice services can be provided to a terminally ill person wherever they live.  This means a patient living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility.  The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.

What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?
A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or inpatient residential centers to care for patients who cannot stay where they usually live.  These patients may require a different place to live during this phase of their life when they need extra care.  However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit.  It is best to find out, well before hospice may be needed, if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.

Do state and federal reviewers inspect and evaluate hospices?
Yes.  There are state licensure requirements that must be met by hospice programs in order for them to deliver care.  In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare.  Hospices must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.

How can I be sure that quality hospice care is provided?
Many hospices use tools to let them see how well they are doing in relation to quality hospice standards.  In addition, most programs use family satisfaction surveys to get feedback on the performance of their programs.  To help hospice programs in making sure they give quality care and service, the National Hospice and Palliative Care Organization has developed recommended standards entitled ‘Standards of Practice for Hospice Programs’ as one way of ensuring quality.

There are also voluntary accreditation organizations that evaluate hospice programs to protect consumers.  These organizations survey hospices to see whether they are providing care that meets defined quality standards.  These reviews consider the customary practices of the hospice, such as policies and procedures, medical records, personal records, evaluation studies, and in many cases also include visits to patients and families currently under care of that hospice program.  A hospice program may volunteer to obtain accreditation from one of these organizations.

Updated: 7/23/2015

Liberalizing Diets in Long-Term Care

Therapeutic diets are often ordered for residents of long-term care facilities. A therapeutic diet is defined as a diet intended to treat a disease or help manage a medical condition. Some examples include a 2 gm sodium, diabetic, and renal diets. However, many of these diets may not be appropriate for nursing home residents. Focus for the long-term care resident is on quality of life, quality of care, as well as residents’ rights. As a part of the The New Dining Practice Standards, The Academy of Nutrition and Dietetics reports that protein-energy malnutrition effects 23% to 85% of long-term care residents and most of these were on restricted diets that might discourage intake. Therefore, the Academy recommends that long-term care facilities individualize residents’ diets to maximize meal intake of those who are at nutritional risk. In many cases, a regular diet improves meal intake, minimizes struggles over dietary compliance, and improves residents’ quality of life. With assessment and monitoring by a registered dietitian, a regular diet (with texture modifications) can be appropriate for many long-term care residents, even those with a diagnosis of diabetes or hypertension.

Liberalized diets are defined by efforts to relax dietary prescriptions established to help manage or treat a disease like diabetes, high blood pressure, congestive heart failure, or renal disease. More than just supporting improved quality of life, a move toward liberalized diets has been shown to result in improved intake and a decrease in the malnutrition and unintended weight loss that often occurs when residents are served food they don’t want—and consequently won’t eat. As diets are liberalized, there is opportunity for experienced dietitians, dietary managers, chefs, and nurses to educate long- and short-term residents on making wise nutritional choices, and helping them understand how their decisions, good or bad, may affect their overall health.

You may ask: will we need to increase medication for all our diabetics? The answer is probably not. According to Nutrition411, “in many frail elderly patients, it is not realistic to manage medical conditions or change medication in an attempt to reduce blood sugar levels.” Glycemic goals for the elderly may include an HbA1c of <8.0 rather than the 7.0 guidelines set for other adults by the American Medical Directors Association. Also, support for the use of regular diets for nursing home residents with type 2 diabetes is provided by a study in which 14 nursing home residents received the regular diet and 14 received a no-concentrated sweets diet. At 6 months, there was no change among the subjects’ HbA1c in either group. The American Diabetes Association recommends the use of regular diets with consistent amounts of carbohydrate at meals and snacks. Calories should meet estimated nutritional needs. Regular menus in long-term care facilities are generally consistent in calories, served at consistent times, and portions are controlled. If desserts are served, the portions are typically small. A fat restriction is not indicated for the majority of this population due to a potential risk of malnutrition. Menus usually contain few fried items if any, gravies are broth-based, not made from meat drippings, and little salt is used in preparation of foods.

Most experts agree that a benefit exists to preventing and treating heart disease even in elderly patients (defined as 65 and older). However, there is evidence that the importance of serum cholesterol levels as a risk factor for coronary heart disease decreases, virtually disappears after age 65. One should consider the functional age of a client, quantity versus quality of life, presence of other risk factors such as dementia, terminal illness, and the resident’s wishes (advanced directives). Even in this case, a regular diet is appropriate to enhance the dining experience and allow choices.

Put yourself in the shoes of these residents. Would you want to finish out your days eating bland food, no dessert, low sodium bread and cheese, or would you rather have a slice of pizza and ice cream? We need to consider residents’ rights and give them choices because they have so few choices left. Mealtime is a way for the resident to take a very active part in their own healthcare. Let’s help them do just that.

 

This article was written by Lisa Stewart and can be found here.


What to Do When Siblings Can’t Agree on a Parent’s Care Needs

Siblings! For some lucky families, having a bunch of adult siblings gather around and plan how to take care of Mom and Dad as their parents’ health begins to fail is a great comfort. For some families, siblings who never got along as kids and have had little to do with each other as adults being thrown together to make touchy decisions is disastrous.
Two siblings hands facing each other one with thumbs down the other with thumbs up

For most families, the journey through the mine of elder care decisions falls somewhere between the two extremes. Elder care has a way of sneaking up on people. Generally, if there is an adult child living in the same town as the aging parents, it is this child who becomes, at the first sign of need, the default caregiver. That usually makes sense. You live in town. Your folks need some help with their Medicare forms, so you stop over. They need help with the yard, so you start taking time away from your family to help out. Then its grocery shopping and then, well, you’re on your way to taking on a second job.

Ideally, before things get to this stage, you’ve had conversations with your parents about how they want their needs met during their later years. They’ve made out the papers naming a Power of Attorney for Health Care (a health directive indicating who will make health decisions if they can’t and detailing their preferences for treatment) and a Power of Attorney for financial affairs. A will should be part of this, as well as other personal papers. Ideally, as well, all siblings are aware of these papers, what they contain and all are in agreement. Ideally – taking care of the elders becomes a family affair. However, life is seldom ideal.

Even in seemingly harmonious families, the person who slowly became a default caregiver can start to feel resentful. The out-of-town siblings can conveniently slide into denial. They aren’t around to see how much help is needed. They see Mom and Dad occasionally, talk to them on the phone, and all seems well. The fact that you, the in-town sibling, are the reason everything is going so smoothly doesn’t really register with them.

This is a red flag for you. It’s time to stop and consider how you are, as a family, going to handle the spiraling needs of aging parents. Most experts would suggest a family meeting. I agree. You, the hands-on caregiver, would explain all you do and give your siblings a chance to help.

You’d find each other’s strengths and weaknesses and work with those. You’d regularly check in with each other and update the whole family as needed. I would suggest this, because it is ideal, and many families can do this with a little work. If this works for your family, congratulations and you can quit reading here.

Those of you who read questions and answers in the family and relationships support group will see the cold hard facts. You will see that, for many, the chances of a civil family meeting where you hash out the needs of your elders and agree who does what are, well, nil. You will see caregivers stressing over siblings accusing them of spending too much of their parents money to care for their parents. You will read the pleas for help from the one sibling who has quit his or her job to care full time for an ailing parent being either ignored by siblings, or worse, being accused of predatory intentions because they are “running the show.”

Option 1: Geriatric Care Manager

When these ugly scenes pop up, there’s usually no way to go but through a third party. It’s nice if you can agree on hiring a geriatric care manager, if you can find one in your area. This person would do the managing, get the help set up, and offer a cool head to work out problems, since the manager is not emotionally involved and doesn’t carry family baggage.

Geriatric care managers are not available in every part of the country, and there is no over-reaching licensing, so you will want to do your homework. But sometimes, these people can make siblings see the light. They can help the ones in denial realize that the one doing hands-on care is “really working.”

Option 2: Counseling

Family counseling is also a good route, if siblings are willing to work on sibling relationships for the sake of their parents. Talking through the issue with an objective third party, who can guide the conversation and keep it civil, can help families work through the challenges associated with caring for an elderly parent. It helps everyone involved to better understand the other family member’s views, frustrations and challenges, and can sometimes offer a fresh perspective.

Option 3: Elder Care Mediation

Unfortunately, many family relationships are beyond that point. This is where elder care mediators come in. These people are trained to mediate family disputes. Likely you can find one through your local court system or in the phone book.

This article was written by CAROL BRADLEY BURSACK and can be found here.


How to Handle an Elder’s Controlling Behavior

Many caregivers have times they want to cut and run. They feel they’ve given their all to their elders, and then their elders want more. The parent wants the adult children to be there all the time. They won’t accept hired help. If the caregiver wants to go out with a spouse or friends, the parent whines about being left alone or wants to go along. The parent complains about the carefully prepared food, the specially chosen clothes, anything at all.

Family Dynamics Plays a Key Role

Sometimes the dynamics between caregiver and care-receiving parents are just a continuation of the family dynamics from the past— dynamics that were always there – a child trying to please a parent who can’t be pleased. The controlling behavior is abusive and likely handed down from generation to generation. This behavior is so entrenched in the family that it seems only therapy could change anything and family therapy is not likely to happen at this late date.

Sometimes, however, if the caregiver gets brave enough to decide what is just bad temper they can live with and what is abuse and then can set boundaries and stick to them, the situation can be made more bearable. There is something else to consider. If the controlling, abusive behavior is not deeply entrenched in the family, the caregiver may be helped to understand the situation by understanding that much controlling behavior by their elders is fear driven.

A Loss of Independence

As people age, they feel a loss of control over so many things, their bodies not the least of it. They often suffer chronic pain. They sometimes lose the ability to walk. The humiliation on incontinence is thrust upon them. So, they lash out at the one person they know (or hope) won’t leave them – you, the caregiver.

Family History May Play a Role in Elder’s Behavior

I’m not excusing the elder’s difficult behavior, and I’m not saying caregivers should allow themselves to be abused. I am suggesting that a caregiver analyze the behavior of the elder and the family dynamics, maybe even inviting a few other opinions, so they can see where this controlling behavior is coming from. This understanding may influence the way you handle the controlling behavior.

Giving Back Some Power

If it seems to be coming from the elders’ frustration of loss, of having everyone else make all of their decisions, you may want to see if there are ways you can hand back some power to the elders without doing harm. Think what you would act like if you had people swoop in and take over your life, even if they had the best of intentions. Then, look at your own behavior and see if you are taking more control than you need to, or doing so because it’s “efficient,” even if not totally necessary. If this is the case, you may want to relent a bit, and make sure the elder can control whatever his capabilities allow. By doing this, you may find life more peaceful all around this way.

No matter what the cause of the controlling behavior – entrenched abuse or fear stemming from uncontrolled loss – setting boundaries with an elder is necessary. You must decide how much you will take. How much negative behavior is excusable because of the circumstances and when does this become abusive? Sticking to the boundaries you set is hard, but consistency is important (unless you are faced by a medical change). Even when dementia is present, there is often some comprehension within the abusive parent that they have gone as far as they can go without losing the caregiver.

Bringing in Reinforcements

If you are in a no-win situation that stems from abuse from childhood, the only solution may be to have the parent cared for by non-family members in assisted living or a nursing home. That is one way to put some distance between you and the controlling parent, without giving up caregiving.

Caregivers walk a fine line with their elders between being caring and being abused. While for each person, the line will be a little different, family history often plays a large part in where this line is drawn. Third party help, whether from a trusted friend or a paid counselor, may be worth your time in finding this line, if you can’t do it alone.

This article was written by  Carol Bradley Bursack and can be found here. 


Families Say Hospice Better Than Hospital for Dying Cancer Patients

hospice better than hospital

hospice better than hospital

January 19, 2016

By Steven Reinberg

HealthDay Reporter

TUESDAY, Jan. 19, 2016 (HealthDay News) — Families of patients dying of cancer felt their loved one had better care and quality of life when they died in a hospice rather than in a hospital’s intensive care unit, a new study reveals.

Relatives reported a better end-of-life experience more often when their loved one received hospice care for more than three days (59 percent) than those who received hospice care for three or fewer days (43 percent). Moreover, only 45 percent of families reported excellent care when the patient was admitted to a hospital intensive care unit (ICU) within 30 days of dying, the researchers found.

“Our findings are a powerful argument for the importance of advance care planning,” said lead researcher Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston.

How and where people die strongly shapes patients’ dying experience and how family members remember it, she said.

“In this study we found that patients’ preferences influenced the care that they received. Now we need to ensure that patients and their family members have the information they need to make choices about their end-of-life experiences and plan for it,” Wright said.

The report was published Jan. 19 in the Journal of the American Medical Association, a special themed issue on end-of-life care.

For the study, Wright and her colleagues collected data on more than 1,100 cancer patients. The investigators used data from interviews with family members of Medicare patients with advanced lung or colon cancer from a study of patients who died by the end of 2011.

The researchers also found that only 42 percent of families of patients who died in the hospital said their loved one had excellent end-of-life care, compared with 57 percent of families whose loved ones died at home or in a hospice.

In addition, family members of patients who did not receive hospice care or received three or fewer days of hospice care were less likely to report the patient died in their preferred location (40 percent) than those who received hospice care for more than three days (73 percent).

“Efforts to increase earlier hospice enrollment and avoid ICU admissions and hospital deaths are important areas to focus on to improve the quality of end-of-life care,” Wright said.

Dr. R. Sean Morrison is president of the American Academy of Hospice and Palliative Medicine and director of the National Palliative Care Research Center. He suggested that “patients who have access to hospice care have a better quality of death and a more peaceful death than patients in hospitals.”

One reason is that hospice care takes into account patients’ values and goals and matches treatment accordingly, explained Morrison, who is also vice chair of research in the Brookdale department of geriatrics and palliative medicine at Mount Sinai School of Medicine in New York City. “Hospice also provides an added layer of support to the family,” he said.

In addition, hospice provides home care for patients who prefer to die at home, Morrison said.

That so many family members report a poor quality of death for their loved ones “should be a wake-up call,” he said.

“If 50 percent of Americans said they were unhappy with their hip replacement, that would be a national outrage,” Morrison added. “The same should be said of the care of people at the end of life — we have to be able to do better.”

Hospice care is available to most patients and most hospitals have palliative care teams, said Dr. Joan Teno, a professor of medicine at the University of Washington in Seattle.

“Now we have to focus on changing physician behavior to improve quality of care,” she said. At the end of life, doctors need to take patients’ values and goals into account, Teno said.

In her recent study, Teno found that only one in five family members of someone who died in an ICU said that care was consistent with their preferences. “Care that is not consistent with your preferences is a sign that the health care system is breaking down. We really have to align care with preferences,” she said.

Moreover, hospice care needs to start earlier, not just in the last three days before dying, Teno said.

“We have to start paying doctors not for procedures in the ICU, but for quality,” Teno said. “The key is — were patients informed about their prognosis, their treatment options, and was the care consistent with their goals and values?”

More information

Visit the National Hospice and Palliative Care Organization for more on end-of-life care.

This article can be found not the news.health.com website, or by clicking here.


Coping With a Loved One’s Terminal Illness

terminal illness

The Long Goodbye

Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Consider, for example, that two thirds of those who are diagnosed with cancer currently have a five-year survival rate.

The result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a life-threatening diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to “live with death” for a prolonged period of time.

Because the nature of death and dying has changed so dramatically, the way we grieve has also changed. The new grief differs from traditional grief in significant ways, not the least of which is that it includes the terminally ill person. In addition, what has increasingly become a protracted process as opposed to an event not only leaves individuals to mourn but typically draws in the entire family of the dying person for months or even for years. This process has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved.

Grief is a family matter

The fact that grief today is a family matter as much as it is an individual one. What is needed is a new template—one that is relevant to families and their experience. That is what we present here. This model is intended to be a road map that you and your family can turn to as you navigate your way through the current realities of death and dying. And by the way, when we use the word family, we include not only blood relations but all those who have a significant connection to the person who carries the diagnosis.

The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence or the unpleasant feeling we get when we find ourselves wishing that the process would end. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are typically busier than those of earlier generations.

Perhaps most important, the new grief involves confronting family issues that may have been dormant but unresolved for many years. These issues typically reemerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together through a process of extended grief. Finally, it means moving forward together as a stronger family after a loved one passes.

Without understanding and without guidance in each of these areas, family members who are forced by circumstances to cope with prolonged grief are vulnerable to serious psychological consequences, including depression, guilt, and debilitating anxiety. These circumstances can even lead to physical illness. Whole families are vulnerable to rupture as a result of a resurgence of unresolved issues that are unearthed as a result of a prolonged terminal illness in a loved one. Even loving couples may find their relationships in jeopardy as a consequence of unwanted lifestyle changes. What families need now—and will need in the future—is guidance for how to anticipate and deal with such issues.

We are proposing here a five-stage model for family grief. However, we want to caution readers not to expect that there will be hard-and-fast boundaries separating these stages. While virtually every family will experience each stage, you should not expect one stage to simply end and another to begin. On the contrary, anticipate finding yourself dealing with issues associated with more than one stage at any given time. In addition, the stages vary in length and intensity, depending, for example, on the length of the terminal illness and whether there are any significant periods of remission.

Stage 1: Crisis

The diagnosis of a terminal illness or a potentially terminal illness creates a crisis for the family. It disrupts the family’s equilibrium, just as a rock thrown into the middle of a still pond disrupts its equilibrium. Factors that affect how you may react at this stage include

  • The history of as well as the current status of your relationship with the ill family member
  • Whether the loved one is a spouse, a parent or a child.
  • What your and the patient’s past (and current) roles in the family are.

Anxiety is the most common initial reaction to the news that a family member is terminally ill. However, if your relationship with the terminal family member has been strained or alienated, you may also find yourself feeling guilty, resentful, or angry. If the terminally ill person is a child or young adult, anger at the seeming injustice of early death may be the dominant emotion shared by family members at this initial stage.

At this first stage of the new grief, all adult family members benefit from guidance issues such as what to expect in terms of their own emotional reactions, whom to seek support from, whom to share memories and emotions, with, and what to expect when they meet with the dying loved one and other family members.

Stage 2: Unity

The reality of impending death has the effect of pressing family members to put even longstanding complaints or grudges on hold as they pull together to move into this second stage of grieving. This may be no problem for family members who have no conflicted feelings or unresolved issues of their own with the loved one, such as favored children. On the other hand, if you feel that you were always a less favored child (or the family scapegoat), you should not be surprised if you experience a complex combination of emotions even as you strive to be a good team member.

In Stage 2, the needs of the dying become paramount. A major issue for all family members in Stage 2 is how they will define their roles with respect to one another and the terminally ill member. If they do not give some thought to this—a situation that is quite common—they may quickly find themselves having regressed into roles they played years earlier, as children and adolescents, but that they would not consciously choose now.

In this second stage of the grief process the family has much work to do, including:

  • Choosing and working with a medical team
  • Navigating the social services maze
  • Pursuing and qualifying for entitlements
  • Ensuring that critical legal work (wills, living wills, and so on) is completed

How the family organizes itself so as to complete these tasks can have powerful psychological and effects on each member, depending on how comfortable each feels with the role he or she is playing.

Stage 3: Upheaval

The family will eventually enter this third stage of grieving if the process of dying goes on for some time, which it typically does today. At this point, the unity that characterizes Stage 2 begins to wear thin as the lifestyles of all involved, whether they recognize it or not, gradually undergo some significant changes. Whereas thoughts and feelings about these changes may have heretofore been put on the back burner, they can no longer be suppressed and begin to leak out. One such feeling is ambivalence, meaning mixed feelings that many people experience when the process of dying evolves into a protracted one in which the loved one’s overall quality of life slowly deteriorates.

Emotions such as guilt, anger, and resentment are likely to emerge in Stage 3. At this stage the most important issue becomes being able to communicate honestly with other family members and with trusted loved ones. Suppressing thoughts and feelings about such upheavals can lead to strained relationships and eventually can cause the entire family to fall apart.

Stage 4: Resolution

As a family moves into the fourth stage of grief, the terminally ill loved one’s health is typically marked by gradual deterioration, punctuated perhaps by periods of stabilization or temporary improvement, and the effects of the prolonged grief process can and should no longer be ignored.

As they enter Stage 4, family members often find themselves having more memories—both good and bad—of past experiences which usually reflect relationships with the patient, these important memories are different, typically telling the story of how family members have viewed their place and role in the family. Often they point to unresolved issues. Some of these memories may evoke feelings of joy or nostalgia; others, however, may evoke anger, jealousy, or envy. Others still cause feelings of pride or, alternatively, of shame and embarrassment.

Stage 4 represents an unprecedented opportunity, if families only choose to seize it. It is an opportunity to resolve longstanding issues, heal wounds, and redefine one’s role in the family—indeed, to alter a family member’s very identity. Every family, as they say, has its share of skeletons in the closet. It is in this fourth stage of the grief process that the skeletons can be brought out of the closet, exposed to the light of the day, and cast forever into oblivion.

In particular, Stage 4 is a time when the following can be addressed and resolved:

  • Old rivalries and jealousies
  • Long-held resentments

These two issues stand in the way of families being able to bond together as strongly as they could and love one another unconditionally. Some family members, however, may react to this opportunity with anxiety instead of with enthusiasm. Rather than seizing the opportunity, they may try to avoid facing these issues. However, facing up to them offers the best opportunity for the family as a whole to move on together to a happier future. In this way the process of family grief can set the stage for growth and renewal for all involved.

Stage 5: Renewal

The final stage of grief actually begins with the funeral and the celebration of the life of the now-lost family member. This is a time of mixed emotions, to be sure, including both sadness and relief. If the family has successfully negotiated the previous four stages, however, this final stage also opens yet another door: to collective as well as personal renewal. It can be a celebration of life as much as it is a marking of a loss. It can be a time of creativity and planning, as the family decides, for example, how it will commemorate anniversaries and birthdays.

As much as Stage 5 is a time for remembrances, it is also a time for looking forward, to revitalized relationships and to new family traditions.

Adapted with permission from Saying Goodbye by Barbara Okun, Ph.D. and Joseph Nowinski, Ph.D. by arrangement with Berkley Publishing Group, a member of Penguin Group (USA), Inc. This article can be found here. 


Palliative Care

Palliative care: Symptom Relief During Illness

Palliative care can provide pain and symptom relief, support, and coordinated, holistic care for people who have serious illnesses. If you or a loved one has a serious or life-threatening illness, you might have thought about palliative care. To understand palliative care and how it can help relieve pain and improve quality of life, consider the following questions.

What is palliative care?

 Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease.

Palliative care takes into account your emotional, physical and spiritual needs and goals — as well as the needs of your family. It’s offered alongside curative or other treatments you may be receiving.

Who can benefit from palliative care?

 Anyone who has a serious or life-threatening illness can benefit from palliative care, either to treat symptoms of the disease, such as pain or shortness of breath, or to ease the side effects of treatment, such as fatigue or nausea.

Palliative care may be a good option for children and adults with a serious illness who need help:

  • Managing symptoms
  • Addressing concerns that matter most to them
  • Understanding what to expect with their care plan
  • Understanding programs and resources available to support them throughout their illness
  • Understanding the pros and cons of treatment options
  • Making decisions in line with their personal values and goals

How does palliative care work?

 Palliative care can be provided throughout treatment for a serious illness — whether you or your loved one is being treated in a hospital, at home or in a care facility. This specialized medical care is provided by a team of doctors, nurses and other specially trained people. They work with you and your family to create a care plan to prevent and ease suffering and improve your daily life. This plan will be carried out in coordination with your primary care team in a way that works well with any other treatment you’re receiving.

A palliative care specialist can also help you or your loved one communicate with doctors and family members and create a smooth transition between the hospital and home care or nursing facilities. The palliative care team will educate you and your family members about what to expect and schedule routine meetings to discuss ongoing care throughout the course of your illness.

What are some real-life examples of palliative care?

 Here’s one example of how palliative care works: You have a history of heart failure and are increasingly short of breath. This makes it hard for you to do even simple chores around the house. You live at home with a partner who also has health problems. You find that getting all of the care you and your partner need is becoming more difficult, and you’re not sure how to plan for the future. This has been stressful for you and your family physically, psychologically, spiritually and financially.

Your primary care doctor suggests that you consider palliative care and explains that a palliative care team will work with you to determine how to ease your symptoms and improve your quality of life.

 

 

This article and others like it can be found here or by visiting www.mayoclinic.org.