Hospice Too Often Used as ‘Last Resort’ for Many Seniors


Three days.

That's the maximum amount of time that 28 percent of seniors in hospice spend getting specialized care, according to a report in the Journal of the American Medical Association.

Researchers from Brown University examined the records of 848,000 Medicare fee-for-service beneficiaries to uncover trends in end-of-life care for seniors between the years of 2000 and 2009.

They unearthed a mixture of positive and negative developments.

The good news: overall, the number of seniors who are dying in hospice care settings is steadily increasing, from about 22 percent in 2000 to just over 42 percent by 2009.

However, dying seniors are also experiencing, "More ICU utilization, more repeat hospitalization and more late transitions in the last few days of life," according to lead study author Joan Teno, M.D., M.S., professor of health services, policy and practice at the Warren Alpert School of Medicine.

End-of-life moves take toll on health, finances

Teno's team discovered a 48 percent increase in the number of care transitions (i.e. going from home, to hospital, to nursing home, to hospice care, etc.) faced by fragile elders in their final weeks.

These moves have the potential to deal a series of substantial blows to a senior's health and finances.

From the medical standpoint, more changes means there's more room for error. There's a greater likelihood that some important element of a senior's care will get lost in the shuffle.

"If you go to three different health care settings, you essentially have three different health care providers who have three different ways of doing things, from dispensing meds to helping with activities of daily life," Judy Bartel, Chief Clinical Officer for Hospice of the Western Reserve, points out.

Disruptions in routine and environmental changes can also have a profoundly negative impact on the physical, emotional and cognitive health of a frail senior.

Bartel adds that the financial costs of multiple care transitions at the end of an elder's life can add up to astronomical amounts, particularly if they don't have enough insurance coverage.

She recounts the story of her own mother, whose week long stint in the hospital prior to going on hospice ended up costing her and her family $15,000 (the 20 percent co-pay not covered by Medicare) because she lacked supplemental insurance.

The doctor's dilemma

According to Bartel, part of the reason more people don't get hospice care sooner is that we live in a "death-defying society."

We assume (and hope) that advances in modern medicine can somehow cure all of our ailments. For many chronic illnesses, however, the best that medicine can do is temporarily ward off the inevitable.

"Many people don't recognize that a disease is terminal and progressive," says Bartel. "I can't tell you how many times I hear, ‘My mother has a little bit of heart failure,' or that a senior with COPD (chronic obstructive pulmonary disorder) has a ‘little bit of a breathing problem.'"

This issue is caused, in part, by miscommunication between doctor, patient and caregiver.

Medicare requires hospice patients to have a doctor-approved prognosis of six months or less—something that can difficult for doctors to determine, depending on the disease.

Then there's the issue of how the physician interprets the medical maxim; "First, do no harm."

"Many healthcare professionals don't consider hospice as a treatment option sooner because they perceive end-of-life care as giving up, or ‘doing harm,' by not continuing to treat a disease progressively," says Nicole Levitan, a social worker at MJHS Menorah Center for Rehabilitation and Nursing Care in Brooklyn, NY.

Dementia difficulties

The number of individuals with dementia who spend their final days in a nursing home, or an ICU has been steadily increasing over the past ten years, according to Teno's team.

Dementia presents a particular challenge for people seeking hospice care.

The unpredictable nature of the cognitive decline in someone with dementia makes it hard for a doctor to provide an accurate estimation of how long a person with the disease will live.

Typically, a dementia sufferer has less than a week left of life when they go on hospice.

Levitan considers these wasted opportunities because hospice offers a number of unique benefits to people with dementia, including music therapy and one-on-one social interactions, both of which can be particularly comforting to a person struggling with profound memory loss.

Different hospices, different rules

An additional barrier to hospice care for some seniors was highlighted in a recent report of a nationwide survey of 600 hospices, published in the journal, Health Affairs.

The results of the investigation showed that 78 percent of hospices had enrollment guidelines that could be overly-restrictive, particularly for seniors with pricey health needs.

To get Medicare to cover hospice costs, a senior must forfeit their right to receive curative treatment for their condition. They are only allowed to get palliative treatments aimed at minimizing their physical, emotional and spiritual discomfort.

The issue, as pointed out by the study authors, is that some treatments can fall into both the curative and pain relief care camps.

For instance, most hospice providers won't accept cancer patients who want to continue undergoing chemotherapy because it is considered a curative treatment. However, chemotherapy could also be considered a palliative treatment if it is used to shrink a tumor that is causing a person pain.

Since their care practices are heavily monitored by Medicare, hospice providers must tread lightly to avoid having their funding cut. Thus, they adopt more strict enrollment policies for applicants.

According to the study authors, smaller hospice centers and for-profit hospices tended to have more restrictive enrollment guidelines.

It takes time to choose the right hospice care provider, time that a dying senior may not have.

Bartel urges seniors and their caregivers to proactively research hospice care options in their area. "Call too soon, call often, let us say no to you, rather than you saying no to the concept of hospice," she says.

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Our mother passed away quietly in the comfort of my home surrounded by loved ones 2/15/2013 and was buried this past Monday 2/25/13. She received last rights from our priest that morning.She was in the end stages of Alzheimers and I cared for her at home 24/7 for three years. My mother began receiving in home service from Hospice three months prior to her death. The were caring, professional and attentive. Without home hospice support my mother most likely would have had to endure multiple traumatizing trips to the hospital or doctors offices. Through hospice my mother and I as her caregiver both received nutritional foods from Food and Friends thus, enabling me to concentrate my full attention on my mother and have food to eat myself when I was too tired or "forgot" to feed myself. I have sisters, daughters, cousins, and other family members who were supportive but they resided out of state and couldn't participate in her daily care. In the final few weeks my mother had dysphagia (couldn't swallow), was totally incontinent and couldn't sit up on her own. In the last few days before she died, she could no longer swallow/eat, speak or respond and depended on meds provided through hospice to keep her pain free. She went into a deep sleep/coma the morning of her death and drew her last quiet breath the evening of 2/15/13. Under medicare hospice provides an interdisciplinary team comprised of a doctor, RN, LPN, CNA, Social Worker, Spiritual advisor, 24 hour support, a hospital bed with a pressure pad to help prevent bedsores, bedside commode, tray table, diapers, pads, personal care supplies, food delivery options, etc. We used and were delighted with the services of Hospice and Food and Friends in the Washington, D.C. area. Hospice will even continue to provide grief counseling to me as my mother's caregiver and any family members throughout the U.S. who may need support for the next 13 months. Prior to three months ago I had no idea that my mother was eligible for hospice services. My mother was not eligible for medicaid and placing her in a nursing home would have been a final option. I read about hospice as an option on this site (Aging Care) and did the research from there. I still had to provide the majority of daily physical care to my mother but having the physical, medical, emotional and spiritual support from hospice was a life saver and stress reducer. Alzheimers is a horrific disease wherein, the person is slowly dying and robbed of their independence and dignity and you grieve for them bit by bit. Few people understand the progression and full impact of this disease. The brain controls everything. Alzheimers is not just simply about "forgetting" things. With dementia/Alzheimers, you don't get the same reaction as when you tell someone your family member has cancer or heart disease therefore, people don't realize how critical your loved one is or how much you as a caregiver or family member need help or a shoulder to cry on. I'm strong, spiritually grounded, generally patient and have a loving family. But during the final weeks and after my mother's death I've had panic attacks. I had retired from teaching to care for my Mom and will NEVER regret that decision. I thought that I could handle taking care of my mother by myself until the end with minimal support. However, the end stages are extremely difficult and changes can happen drastically. You then experience in "real time" everything you've researched or heard about this horrible disease. I'm so grateful that in the final few months, I had hospice in home support to lean on for palliative care and emotional support. Hospice members even attended my mother's funeral the other day. When the last of my family members returns to their out of state homes I will have friends to call or visit locally, but I know I will need and seek out grief support. I now have to move forward and learn how to live life outside of being a caregiver. This Aging Care site, the Alzheimer Asso. and Linkedin, with all the articles and feedback has been a lifeline for me as well as my sisters and daughters. I now know more than I ever cared to know about Alzheimers, home care for the elderly, and sick, pain meds, current research, policies, etc. Please don't hesitate to contact me or someone else if you are a caregiver and don't know where to turn. It may not feel like it but you're not alone even if it's just you and your loved one in a "physical" setting by yourselves. Thank you and continue to care...people are not "invisible" no matter their age. Stephanie and family
I do appreciate this article. It seems to me the medical profession (and possibly other professions) need to address the area of death and dying, especially in the elderly. I think often then death of a patient is seen as a failure, when, in fact, death is natural. We live in a youth oriented (look at the ridiculous attempts to maintain the appearance of youth by the use of plastic surgery etc. and as written above "we live in a "death-defying society." If families are minimizing the severity of their parent's health issues, it will only encourage more treatment in a vain attempt to stave off the inevitable. The responsibility to accept death rests on many shoulders - the medical profession, society in general, the individual, for some. I have read a study of the number of surgeries done as a elderly person approaches end of life. In the 6 months prior to death, the number of surgeries increased significantly. Of course, in some cases the surgery may have hastened death, and at great cost. The point at which palliative care and hospice takes over probably needs to be revisited. Families need to be counselled to accepting the reality that their loved one will not recover a decent quality of life, but are in a decline from which no treatment will save them. It has been my opinion that many of the expensive techniques/"treatments" that are used on patients now are prolonging the dying process rather than prolonging life that has any reasonable quality. As I understand it, hospice at its best, provides for end of life care for the patient and the family. My hope and prayer is that this service is made more readily available. I had a friend who, in her 40s died gasping for breath and pleading for help for 3 days as a result of breast cancer that had spread to her lungs. She was a wonderful, strong person. That was over 25 years ago and I am still very angry about the lack of help available to her. I saw a dear friend die of cancer in his 50s, having fought the good fight, and decided against more procedures. They gave him morphine and his last hours were peaceful with his family and me around his bed. My father went into Cheyne Stokes breathing (an indication that death is near) . My mother asked the doctor to help him. They gave him something daily, and even then it took 3 days for him to go, as his heart, lungs, kidneys and liver were good, but his brain was not. He had vascular dementia. I am thankful they helped him and made his last days more comfortable. We need compassion added to the treatment mix..
I completely agree. When I was working, residents were waiting to be placed on Hospice until days before dying. Much education needs to be done for the benefit of Seniors! There are many that don't understand Hospice and see it as a death sentence...whens it's not.