Category Archives: Caregiving – General

Four Caregiver Coping Strategies

Date
Posted by

In a short article on caregiver burden — “caregiving is an overwhelming job” — these four coping strategies were listed for caregivers:

  • Primary caregivers may do a lot, but they can’t do it all. Get additional help from friends, siblings or other family members. If you don’t get this extra support, you’ll likely burn out much more quickly, which could affect your ability to provide quality care. Also, look into and take advantage of low-cost or free community resources, including adult day care centers, home health aides, respite care, meal delivery and transportation services.
  • Take a few minutes every evening to write about your feelings — good and bad. Doing so may help you gain better understanding and control of your emotions.
  • Seek support groups or professional counseling services. [Disease-specific] support groups are wonderful because they allow you to connect with people experiencing very similar caregiving situations. You can share your frustrations and concerns in a nonjudgmental environment, receive encouragement, exchange practical information on problems and solutions and learn about resources you never knew existed. One-on-one therapy with a counselor skilled in caregiver stress may be helpful as well.
  • Learn to relax. Do whatever it takes to release tension and maintain a sense of calm. Meditating, doing yoga or tai chi, exercising, reading and engaging in a hobby or enjoyable activity can all help to melt stress and release feel-good endorphins.

Here’s a link to the article but what is listed above is all there is on coping strategies:
www.wholehealthinsider.com/newsletter/high-burden-placed-alzheimers-caregivers/

Robin

Medical Treatments – Potential for Benefit and Harm

Date
Posted by

This email isn’t directly related to caregiving or any neurological disorder, but the thought-provoking articles about being a good healthcare consumer are worth sharing.  I found that reading these articles required attention; they probably aren’t meant to be read by stressed-out caregivers.

“The Upshot” is a New York Times blog that covers public policy issues.

NNT – NUMBER NEEDED TO TREAT

Last Monday, there was a blog post about whether a given medical treatment can help someone.  The basic point is that “many fewer people benefit from medical therapies than we tend to think.” See:

www.nytimes.com/2015/01/27/upshot/can-this-treatment-help-me-theres-a-statistic-for-that.html

There is a metric known as the NNT or number needed to treat. “An N.N.T. of one would mean every person treated improves and every person not treated fails to, which is how we tend to think most therapies work.  What may surprise you is that N.N.T.s are often much higher than one. Double- and even triple-digit N.N.T.s are common.”  I don’t think most of us are aware of this.

The article reviews several examples.

Example #1 – daily aspirin for heart attack prevention.  The NNT is 2,000.  “According to clinical trials, if about 2,000 people [take a daily aspirin] over a two-year period, one additional first heart attack will be prevented. … Of course, nobody knows if they’re the lucky one for whom aspirin is helpful. So, if aspirin is cheap and doesn’t cause much harm, it might be worth taking, even if the chances of benefit are small. But this already reflects a trade-off we rarely consider rationally.”  The authors note that “N.N.T.s as calculated from clinical trial data are probably lower than those based on real-world medical care, not higher.”

Example #2 – Mediterranean diet for heart attack prevention.  The NNT is either 61 or 30, depending on which group you are considering.  “In people who have never had a heart attack, but who are at risk, the N.N.T. is 61 to avoid a heart attack, stroke or death. And that is for people who adhere to the diet for about five years. For those at higher risk, who have already had a heart attack, to avoid one additional death, the N.N.T. is about 30. That’s the number of people who would have to adhere to the diet for four years…”

The authors point out that an NNT of 30 is “pretty good.”  But they go on to say:  “When you hear that the diet prevents heart attacks, then it might sound worth it. But does it still sound worth it when you consider that 29 out of 30 people who stick to the diet for several years see no benefit at all? Will you stick to it for years and be the lucky one for whom that matters?”

theNNT.COM

Two clinical researchers have put together a website of NNT data from clinical trials.  You can take a short tour of the reviews here:

www.thennt.com/

Or see a list of the reviews, organized by specialty, here:

www.thennt.com/home-nnt/

Each treatment is rated as to whether the benefits outweigh the harms, or vice versa.

NNH – NUMBER NEEDED TO HARM

Tomorrow’s blog post is about a complementary number – the NNH or number needed to harm.  See:

www.nytimes.com/2015/02/03/upshot/how-to-measure-a-medical-treatments-potential-for-harm.html

Back to our aspirin for heart attack prevention example:

Example #3 – “[The] N.N.T. for aspirin to prevent one additional heart attack over two years is 2,000. Even though this means that you have less than a 0.1 percent chance of seeing a benefit, you might think it’s worth it. After all, it’s just an aspirin. What harm could it do?  But aspirin can cause a number of problems, including increasing the chance of bleeding in the head or gastrointestinal tract. Not everyone who takes aspirin will bleed. Moreover, some people will bleed whether or not they take aspirin.  Aspirin’s N.N.H. for such major bleeding events is 3,333. … Granted, one out of 3,333 is a pretty tiny risk. But remember that the chance of benefit is pretty small, too.”

The authors encourage us to consider the NNT and NNH when making decisions about medical treatment for ourselves or others.

Robin

“When should I start thinking about hospice care”

Date
Posted by

I ran across this very helpful Washington Post article from last week about hospice.  It addresses:

* what is hospice care?
* how much care does hospice provide?
* who pays for hospice care?
* if hospice is not a place, where do I get its care?
* why would I want hospice care? Can’t my doctors and local hospital adequately meet my needs?
* when should I start to think about hospice?
* are all hospices the same?
* how do I find a good hospice?  One answer – ask at a support group meeting!
* are there any other criteria to judge the quality of a hospice?
* where can I go (online) for additional help?

Here’s a link to the full article:

www.washingtonpost.com/national/health-science/when-should-i-start-to-think-about-hospice-care-for-myself-or-a-loved-one/2015/01/26/d5cecf90-8a08-11e4-a085-34e9b9f09a58_story.html

Health & Science
When should I start thinking about hospice care, for myself or a loved one?
Washington Post
By Caroline E. Mayer
January 26, 2015

Robin

 

“Choosing a Hospice: 16 Questions to Ask”

Date
Posted by

The American Hospice Foundation publishes a great list of 16 questions to ask any hospice agency during an interview.  See:

americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/

Robin

—————————————————————

Choosing a Hospice: 16 Questions to Ask
American Hospice Foundation

Hospice is a set of services that we all may need someday – if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these questions will give you clues about quality of care and help you make an informed assessment.

1.  What do others say about this hospice? Get references both from people you know and from people in the field – e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided. Anecdote and word of mouth won’t paint a full picture but they are still valuable data points.

2.  How long has the hospice been in operation? If it has been around for a while, that’s an indication of stability.

3.  Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.

4.  Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.

5.  What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.

6.  Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?

7.  Can the hospice meet your specific needs? Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns.

8.  Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.

9.  How rapid is crisis response? If the family needs someone to come to the home at 3AM on a Saturday, where would that person come from? What is their average response time?

10.  What are the options for inpatient care? Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.

11.  If the family caregiver gets really exhausted can we get respite care? Caring for someone with a serious illness can be exhausting and, at times, challenging. In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask the hospice under what conditions the hospice provides these types of care.

12.  Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/nursing.

13  How are patient/family concerns handled? Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?

14.  How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.

15.  What are your general impressions at initial contact? What is your reaction to the people you talk to?

16.  What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters.

 

Washington Post’s “Hospice Guide” and how to evaluate a hospice agency

Date
Posted by

Hope everyone is enjoying the holiday season!

The Washington Post has published a series of articles about the “business of dying.”  In conjunction with that series, they have developed a useful “Hospice Guide.” The guide lists over 3,000 hospice agencies by county, by state.  Both for-profit and not-for-profit hospice agencies are listed.  One fact the guide reveals is that for-profit hospices spend less money per patient on nursing care, on average.

Here’s a link:

Washington Post Hospice Guide
www.washingtonpost.com/wp-srv/special/business/hospice-quality/

In a description of how to use this guide, the Washington Post offers expert advice on how to evaluate a hospice agency (using the parameters included in the guide).  This expert advice includes:

  • Age and size: The experts generally favored hospices that are older and that serve more than a small number patients at a time. A hospice over say, 10 years old, has a track record as well as experience. Medium-sized and larger hospices may be better able to provide backup and more intense services, experts said.
  • Accreditation: Hospices that have been accredited have opened themselves up to outside scrutiny. 
  • Live-discharge rate: This statistic shows how many people leave the hospice alive and several industry experts have suggested it is a good reflection of quality.
  • Spending: The guide includes data on how much the hospice spends per patient on nurses, doctors and therapy.
  • Patients receiving home visit in last two days: For patients receiving routine hospice care at home, the hardest days for the patient and family are often the last days prior to death. This measures the proportion of those patients who received a skilled visit from a nurse or therapist in those last two days.

Robin