Help Aging Parents–Hospice: Why Wait To Call?

Call Hospice for Your Mom!

I meddled! A former neighbor sounded awful when I phoned the other night. She’s very old; has had cancer successfully treated over decades, but it sounds like the end may be near. There’s no “maybe” about the pain she says she has had for some time.  There’s an aide with her 24/7 so I didn’t think hospice was involved, although it sounded like they should be.

After speaking with a mutual friend, I talked myself into feeling comfortable phoning one of her two adult children. (I knew them from years ago–although I’d only been sporadically in touch since their mother moved away.)

Uncomfortable conversations immediately trigger my What’s the Goal? response. My answer to myself: Find out if hospice is involved. If not, respectfully and gently provide information.

Both children live far from their mother. Knowing the family dynamics from way back I understand one bears 99.9-100% of the responsibility and has been great. That’s the logical child to contact.

I made the call, leaving a simple message. It had three parts, the first–objective information: I phoned your mother several nights ago and she said she felt awful and could she call me back.” Next, the personal: “I haven’t heard back so I’m wondering how she’s doing.” Then conveying understanding: “It sounds like this is a rough time and I hope my phone call isn’t an intrusion.”

My call was returned within the hour, with appreciation. (We need to be careful not to make adult children feel defensive/judged. Easier said than done.) The simple, thought-out-beforehand sentence works.

I learned things were stressful. Doctors weren’t returning calls in a timely fashion; things got delayed, cancelled. A special trip to visit the mother in Florida 10 days earlier resulted in employing a geriatric care manager to move things forward. Approval from the insurance company was needed for an important test. They’re still waiting–it has been over a week.  Depending upon the test results, the plan is to check the availability of hospice care.

Bingo! The logical time to mention hospice was at hand. “Why wait to call hospice?” I asked, following up with the thought that hospice could provide some relief. Not knowing if hospice requirements differ by state, I made that known. Then I shared my parents’ experience when hospice became involved, made them more comfortable, and the relief I felt having the extra support. The response I got makes me think the message–why wait– got through. Calling hospice sooner, not later, seemed to be the new plan.

Bottom line: Calling hospice–or suggesting someone contact hospice–may be uncomfortable. But calling sooner–rather than later–offers professional, appropriate comfort to patient and family and a better chance for a satisfying ending. So many have said “I wish I’d called hospice sooner.”

Related: Aging Parents and Hospice: To Call, Not to Call, When to Call
               
A sample of what Googling  “who is eligible for hospice in Florida” provides.

Check out “Newsworthy” (right sidebar). Links to timely tips, information and research from top universities. respected professionals and selected publications–to help parents age well.

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Aging Parents: Important New Guidelines Could Make it Easier for Those nearing Life’s End

DYING IN AMERICA AND HONORING INDIVIDUAL PREFERENCES NEAR THE END OF LIFE, with recommendations for major changes, was issued last week (9/17/14) by THE NATIONAL ACADEMY OF MEDICINE’S RESEARCH ARM, THE INSTITUTE OF MEDICINE. It suggests an overhaul of current practice at almost every level. (See “Newsworthy” 9/17/14 at right for NY Times report on the report.) 

Palliative Care is mentioned several times as an important aspect of the “overhaul” ideas. While we obviously can’t count on this recommended “overhaul” to take place immediately, it would seem that those not familiar with palliative care, would do well to check out specifics in the “Newsworthy” (right sidebar) 12/16/13 NPR Palliative Care broadcast–as well as “Related” below.

Palliative care is an available option that– if appropriate–could make a significant difference for caregivers and the comfort level of elders as we try to help parents age well….until the end.

Related: Post– Palliative Care and Hospice Both Help Aging Parents: Know the Difference.
                         An Oregon Health Sciences University Prof Weighs in, supporting the new Guidelines

 

 

Help Aging Parents: A Plea for HELP!

DOES THIS INSURANCE PLAN AND ITS DOCTORS
TRY TO SAVE MONEY AT YOUR PARENTS’ EXPENSE?

Have you had this experience? If so, please respond with situation and resolution (or not) of problem using our blog email: helpagingparents@gmail.com or simply comment below. children in their 50’s-60’s and two elderly, ailing parents will be eternally grateful.

Details: Father and his wife (92 and 90 respectively) have been paying for Kaiser Plan Health Coverage for 25 years. Father’s prostate cancer of 20 years has metastasized to his ribs and tail bone, making it difficult for him to bathe himself and perform other normal daily functions. He just returned home after 6 days in the hospital and 12 days of rehab due to a fall. Other health problems: dementia, COPD and asthma.

The wife, at 90, has mobility problems, walks with a cane, can’t help husband’s physical needs.

The family interviewed caregivers before their father came home, some of whom didn’t want the job because–after hearing the situation—didn’t think he’d live many more months. That said, his Kaiser doctor refuses to give permission for Hospice. She says it’s “too early” and they can talk about it later.

Specifically, the children met with the Kaiser doctor last week and inquired about hospice or palliative care. The doctor said “when the time comes” it would be addressed and, according to the child who inquired, doctor looked puzzled that they knew about palliative care.

The Kaiser doctor further says if the kids don’t get their parents into assisted living or get home care help, both will end up in a nursing home. They have hired a caregiver, but funds are limited. They don’t understand why Hospice–or at the least–palliative care isn’t being offered.

This blog follower and her siblings are hoping you will respond asap with suggestions. They don’t know where to turn next.

Aging Parents: As Mother Lay Dying

Among the Things I Wish I Knew…Ahead of Time

Helping parents age well doesn’t end until their heart beats its last beat, to my way of thinking. I didn’t realize I thought (or felt) this until Mother rebounded amazingly for three months after successful heart valve surgery, then went into a coma. (We’d been warned the surgery could stress other parts of the heart and end in heart failure, which it did.)

Mother was already hospitalized when I raced (flew) cross country, rented a car, and broke every speed limit to be at her hospital bedside. Half hour later she was in a coma. Something in me (and I think in Dad) wanted her to be able to die at home. But it was Memorial Day weekend and we learned, upon asking, that getting any kind of caregiver etc. help immediately was out of the question.

An attractive room in the mostly-empty hospice section of the hospital was available and was suggested to us as an option. Local designers had decorated each room individually–very pleasant atmosphere. Regardless of Mother’s state of functioning, she would like this pretty room I thought. She was moved there. Perhaps it made only Dad and me feel better.

Never-the-less I remember going out within the hour and buying fresh fragrant flowers for her bedside table. I wasn’t in denial. She’d always loved the fragrance of flowers and although they say hearing is the last to go, I was uncertain about sense of smell. Looking back, I realize I would do what I could to help my parents age as well as possible until the very end. Today I think that would have included palliative care. We would have been better prepared. If Mother and Dad wanted it, Mother would have been at home and not in the hospital at the end.

This outstanding (to me) NPR radio segment, “How Palliative Care Helps–One Iowa Family’s Experience,” features a family and the physician supporting them. A rare front-row seat, so to speak, of palliative care in action. Those of us who have been helping our parents age well (whether on-site, or from far away like myself), help both our parents and ourselves when we understand outside sources of support (palliative care and hospice) and their differences–way in advance of ever needing them–if possible.

Related:

https://helpparentsagewell.com/2013/03/09/pallative-care-and-hospice-both-help-aging-parents-consider-the-differences/

 “Newsworthy” (right sidebar). Links to timely research and information from highly respected universities and professionals,  plus some practical stuff, to help parents age well.

Palliative Care and Hospice Help Parents Age Well Until the End: What’s the Difference?

“Perhaps the most common misconception about palliative care is
that it is synonymous with hospice care….”
UCLA Medicine Magazine 2009
(Now Called U)

Aging as well as possible, as long as possible

Some time ago I saved the link to Comfort Measures from a 2009 UCLA (University of California at Los Angeles) Medicine Magazine, written after Mother’s death. Prior to reading it, I’d thought palliative care was the same as Hospice. It isn’t. This informative article explains that “…….it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.”

In other words, palliative care can begin long before a doctor’s diagnosis that the patient will probably die within 6 months. That’s the diagnosis needed when Hospice offers its services. (That said, calling in Hospice is not necessarily confirming a death sentence. See Hospice link below with information that not all people receiving Hospice care die within 6 months. Some improve due to Hospice’s care and go off Hospice…and can still go back on later.)

Excerpt:

IT WASN’T LONG AGO that comfort and the psychosocial needs of seriously ill patients and their families were not top priorities for medicine, but that has changed. “The relief of suffering and the cure of disease are both obligations of the medical profession,” says Bruce Ferrell, M.D., director of palliative-care services at UCLA. “People sometimes see a rigid healthcare system that can become disconnected from the mission of providing people with humane, respectful care. Our goal is to assist them so that patients don’t suffer needlessly.”

Palliative care – which aims to relieve suffering and assist seriously ill patients and their families to address issues of treatment and support that arise in life-threatening illnesses – is among the fastest growing medical subspecialties, fueled by a number of forces, not the least of which is consumer demand. The Journal of Palliative Medicine estimates that palliative- care programs have doubled since 2000, with more than half of hospitals with at least 50 beds now having such a program. That includes UCLA, which since 2007 has had a palliative-care service providing consultations 24 hours a day, seven days a week, at both its Westwood and Santa Monica campuses….

Perhaps the most common misconception about palliative care is that it is synonymous with hospice care; in fact, though it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.

“It used to be that all of our efforts at patient care were directed at curative interventions up until the point that patients were on their deathbed, and then everything turned to comforting them in the last few days of life,” says Dr. Ferrell. “Today, there is greater appreciation for the importance of symptom control and discussions with patients and their families about the natural history of their disease early in the course of the illness.”

Read Comfort Measures in its entirety at: http://magazine.uclahealth.org/body.cfm?id=6&action=detail&ref=702

Related:
https://helpparentsagewell.com/2012/03/24/aging-parents-and-hospice-to-call-not-to-call-when-to-call/

http://www.npr.org/blogs/health/2013/12/16/250194489/how-palliative-care-helps-one-iowa-family-s-experience