Category Archives: Caregiving – General

“Taking Care of You” – chapter one from “Caregiver Helpbook”

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“Taking Care of You” – chapter one from “Caregiver Helpbook”

Organizations around the US, including Family Caregiver Alliance in the Bay Area (caregiver.org), teach a course called “Powerful Tools for Caregivers,” developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.  The course is designed to help “family caregivers develop a wealth of self-care tools to: reduce personal stress; change negative self talk; communicate more effectively in challenging situations; manage their emotions; and make tough caregiving decisions.”

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  The book is available in both English and Spanish for a reasonable cost ($30).  Brain Support Network volunteer Denise Dagan is reading the booklet and will be sharing the highlights, chapter by chapter.

The title of chapter one is “Taking Care of You.”  As the book’s author notes:  “Research studies find high rates of depression and anxiety among caregivers and increased vulnerability to health problems.  They often feel they have no control over events – and that feeling of powerlessness has a significant negative impact on caregivers’ physical and emotional health.”

Chapter one offers suggestions on how you can take care of yourself, as a caregiver.  You’re more likely to be a loving and patient caregiver when you meet some of your own needs.

Here’s Denise’s report on chapter one.

Robin

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Notes by Denise

The Caregiver Helpbook
Chapter One – Taking Care of You

“When you board an airplane, the flight attendant gives several safety instructions.  One of them is, ‘If oxygen masks drop down, put on your oxygen mask first before helping others.’  This is because if you don’t take care of yourself first, you may not be able to help those who need your help.  Its the same thing with caregiving.  When you take care of yourself, everyone benefits.”

A caregiver shares her healthy caregiver perspective:  “To some degree I recognized that caregiving was like a job and my goal was to find the best way to get the job done.  A friend also told me that doing any job well – including the job of caregiving – requires four things:
1. Recognizing you can’t do everything yourself – you work with others.
2. Taking daily breaks.
3. Taking vacations to renew oneself.
4. Being realistic about what you can do.”

You’re more likely to be a loving and patient caregiver when you meet some of your own needs.

Here is the “Powerful Tools for Caregivers” step-by-step guide for setting goals to meet your own needs:

First, write down a few things you would like to be able to do, like exercise, get to church, or read.  (Indicate which you would like to work on first.)

Second, brainstorm all the different things you might do to reach your first goal.
“Its important not to assume that an option is unworkable until you have thoroughly investigated it or given it a try.  Assumptions are major self-care enemies!”  (Indicate two or three options that seem most do-able, and select one to try first.)

Third, turn your option into a plan of action.  That has five steps:

1. Decide what you want to do.

Think about what is realistic and reachable in a week, to avoid frustration.  “An action plan starts with the words, ‘I will…’  If you find yourself saying, ‘I’ll try to…,’ or ‘I have to…,’ it probably isn’t something you truly want to do.”

2. Make your plan behavior-specific.

“Taking better care of myself” is not a specific behavior.  Making an appointment for a physical, or walking three times a week, is.

3. Think it through.

Answer these four questions:
– What are you going to do?       I will take a walk.
– How much will you do?             Will you walk two blocks or for 20 minutes?
– When will you do this?              What time of day can you walk?
– How often will you do this?      Three times a week? (Monday, Wednesday, and Friday)

A common mistake is to be overly optimistic.  Its better to plan to do something once or twice a week and exceed your plan than to add pressure, disappointment, and stress.  Remember, this is supposed to help you take care of yourself, so plan for success!

4. Determine your confidence level.

With your plan in mind, on a scale of 0-10 (with 0 being not at all confident, and 10 being totally confident), how confident are you that you can get in that afternoon 20 minute walk three times this week?  If your answer is 7 or higher, your plan is probably realistic and achievable.  If not, something probably needs adjusting.

5. Write down your action plan.

Writing it down helps us to remember and solidifies the agreement we’ve made with ourselves.  “Keep track of how you’re doing.  Write down problems encountered.  Check off activities as you accomplish them.  If you make an adjustment in your plan, make a note of what you did.”

At the end of the week review how things went.  “Are you nearer your overall goal?  How do you feel about what you did?  What obstacles or problems, if any, did you encounter?”  This is a good time to work out the kinks.

Problem Solving Your Action Plan:
– Clearly identify the problem.
– List ideas to solve the problem.
– Select one to try
– Assess the results.  Every week reassess: Identify any problems, brainstorm solutions, try one solution, and keep tweaking the plan until you have a new routine and are well on your way to a happier, healthier you.
– Accept that the problem may not be solvable now. Not all goals are achievable at this time.  Make a plan for the next goal on your list and try implementing that one.

Don’t forget to reward yourself!  Putting a more pleasant routine in place can be its own reward, but, “its important to find healthy pleasures that add enjoyment.  They don’t have to be fancy, expensive or take a lot of time.”  Catch a movie, your favorite TV show or sports.

The end of chapter one has a sample action plan and a blank worksheet for personal use.  It clearly states each step with space to fill in your goal, action plan, confidence level, and a check list for each day of the week with a comment section to keep track of your activity, obstacles, and adjustments.

– Denise

ProPublica’s Vital Signs Project, including standing with federal health programs

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ProPublica’s Vital Signs Project, including standing with federal health programs

ProPublica (propublica.org) launched yesterday a project called “Vital Signs.”  You can access Vital Signs at no charge here:

projects.propublica.org/vital-signs/

In its announcement about the project, ProPublica says it “has accumulated a wealth of data about how medicine is really practiced in the U.S. We’ve got millions of data points on things we believe everyone should know about his or her providers, like whether they’ve been barred from federal health care programs, their prescribing and treatment patterns, and how much money pharmaceutical companies pay them for things like consulting and speaking.”

You can subscribe to email alerts when ProPublica obtains new information on something of interest to you.

ProPublica says:  “Our health care databases, including Dollars for Docs and Prescriber Checkup, have long been among the most popular features of our site, and are a key part of the mission of our data team — to help people use data to make better choices and live better lives. … New to this project is data on health care providers who have been kicked out of government health programs. For the first time, you’ll be able to see your provider’s standing.”

Vital Signs covers five general areas:
* Standing With Federal Health Programs
* Office Visits and Costs
* Relationships with Pharmaceutical and Device Companies
* Prescribing Patterns and Habits
* Surgical Performance

Sounds like this is worth checking out….

Robin

“Pressed Into Caregiving Sooner Than Expected” (about adult children caregivers)

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“Pressed Into Caregiving Sooner Than Expected” (about adult children caregivers)

This article in today’s New York Times is about adult children in their 30s or 40s becoming caregivers to their parents or older relatives.  This article will be of most interest to adult children or those who have adult children.

Here are some excerpts:

* “Beyond the challenges that caregiving brings at any age, these people face particular disruptions.  Among the youngest group, ‘what particularly concerns them is the negative impact on their pursuit of education.’  Caregivers closer to midlife contend with pressures at work and sometimes have to reduce their hours, refuse promotions or retire early. In turn, job loss increases current and future financial strains. Younger caregivers may also have children at home.”

* “Perhaps the most jarring aspect of off-time caregiving, though, is the sense of becoming entirely out of sync with one’s peers. ‘We are so isolated,’ [said one caregiver.] ‘You don’t have contemporaries to confide in.'”

* “‘One way to discharge anger and reduce stress is to be able to talk about it,’ [psychologist] Dr. Cohen said. She worries about younger caregivers’ physical and mental health if they feel unsupported and too overwhelmed to take care of themselves.”

* Consider joining “supportive programs specifically for younger people providing elder care….possibly using social media,” such as Facebook and Twitter.

* “Not one of these caregivers regrets undertaking the role. As Joseph Gaugler, a gerontologist at the University of Minnesota School of Nursing, points out, many caregivers take satisfaction in reciprocating their parents’ sacrifices and pride in doing a good job.”

I thought these comments by one caregiver were interesting:  “She looked into caregiver support groups, but felt she had little in common with their much older members. ‘It’s different when you’ve had your career, your chance to travel,’ Ms. Carthy said. ‘I wouldn’t be so angry if I were retired and I’d already had the chance to live my life.'”

The Brain Support Network caregiver group has a mix of adult children and spouse caregivers.  We occasionally have siblings or siblings-in-law attend.

Plus, I think occasional resentment over being a caregiver is not confined to adult children.  Certainly spouses feel this too.  Older spouses say that they thought these were going to be the golden years but they don’t seem so golden.  And younger spouses struggle with working and caregiving.

Here’s a link to the article:

www.nytimes.com/2017/03/10/health/elder-care-caregiving.html

Pressed Into Caregiving Sooner Than Expected
The New Old Age: New York Times
by Paula Span
March 10, 2017

Robin

 

“Playbook For Managing Problems In Last Chapter Of Life” and planyourlifespan.org

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“Playbook For Managing Problems In Last Chapter Of Life” and planyourlifespan.org

Kaiser Health News (khn.org) publishes a lot of great articles.  Here’s one from today about a “playbook for managing problems in the last chapter of your life.”

Dr. Lee Ann Lindquist, chief of geriatrics at Northwestern’s Feinberg School of Medicine, wondered if people could become better prepared for emergencies — such as a fall, being hospitalized, and a spouse dying or becoming ill — or if people could become better able to plan their futures if health concerns — such as dementia and not being able to keep up one’s home — compromise independence.

According to Dr. Lindquist’s research, seniors don’t do this planning for several reasons:  “I don’t know what to do, I’m uncomfortable asking for help, I’m not at immediate risk of something bad happening, my children will take care of whatever I need, and I’m worried I won’t have enough money, according to a research report published last year.”

To help address the need for planning around these “predictable problems” and the reasons why people don’t plan, Dr. Linquist developed a website, planyourlifespan.org.  The website focuses on three issues — hospitalizations, falling, and developing dementia.

The user is asked a series of questions to obtain preferences.  Here are some examples from the homepage of planyourlifespan.org:

Do you know…
* What your rehabilitation options are after a hospitalization?
* How to connect with local services and resources such as in-home care, Villages, and skilled nursing facilities?
* What steps you can take to help prevent falls?

Communication with family members and management of finances are large parts of the website.

Though the focus is on being prepared to turn 80, 90, or 100, I think this website offers an easy-to-use tool for all families coping with neurological disorders, or anyone wanting to share preferences with their healthcare agent.

Certainly looks worth checking out!

The full article is copied below.

Robin

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khn.org/news/a-playbook-for-managing-problems-in-the-last-chapter-of-your-life/

NAVIGATING AGING
A Playbook For Managing Problems In The Last Chapter Of Your Life
By Judith Graham
Kaiser Health News
March 9, 2017

CHICAGO — At least once a day, Dr. Lee Ann Lindquist gets an urgent phone call.

“Mom fell and is in the hospital,” a concerned middle-aged son might report.

“Dad got lost with the car, and we need to stop him from driving,” a distraught middle-aged daughter may explain.

“We don’t know what to do.”

Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, wondered if people could become better prepared for such emergencies, and so she designed a research project to find out.

The result is a unique website, www.planyourlifespan.org, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on.

“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”

What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence.

“People don’t want to think about the last 10 or 15 years of their life, and how they’re going to manage,” Lindquist said.

This isn’t end-of-life planning; it’s planning for the period before the end, when health problems become more common.

Lindquist and collaborators began their research by convening focus groups of 68 seniors — mostly women with an average age of 74. Nearly $2 million in funding came from the Patient-Centered Outcomes Research Institute, created under the Affordable Care Act.

Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes.

Yet most participants hadn’t planned for these kinds of events. Investigators asked why.

Among the reasons seniors offered: I don’t know what to do, I’m uncomfortable asking for help, I’m not at immediate risk of something bad happening, my children will take care of whatever I need, and I’m worried I won’t have enough money, according to a research report published last year.

Developing the website came next. Lindquist and her team decided to focus on three issues the focus groups had raised — hospitalizations, falling and developing dementia — and to include sections on communicating with family members and managing finances.

A group of senior advisers rejected the first version: the typeface was too small; the design, too cluttered; and the content, too complex. They didn’t want to be overwhelmed with information; they wanted the material on the site to be practical and concrete.

The final version “forces people to sit down and think about their future in a very helpful and non-threatening way,” said Phyllis Mitzen, 74, who worked on the project and is president of Skyline Village in downtown Chicago, a community organization with about 100 older adult members.

An individual going through the material is asked to consider a series of questions after examining explanatory information and watching short videos of seniors illustrating the issues being discussed. For instance, which rehabilitation facility would you like to go to if you need intensive therapy after a hospitalization?

Who will take care of your pets, mow your lawn or shovel the snow from your sidewalk while you’re away? Who can collect your mail, check on bills to be paid and get medications for you when you return home?

If you begin having memory problems, who can help you manage your bills and finances? Are you willing to wear a medical alert bracelet if you start getting lost? Would you be willing to have a friend or relative check on your driving or have a formal driving evaluation?

If you require more assistance, are you open to having someone come in to help at home? Would you prefer to live with somebody — if so, whom? Would you be willing to move into a senior community?

The goal is to jump-start conversations about these issues, Lindquist said, just as seniors are encouraged to have conversations about end-of-life preferences.

Those looking for deep dives into topics highlighted on the site will have to look elsewhere. Resources listed are spare and some of the material presented — for instance, how Medicare might cover various services — is overly simplified, noted Carol Levine, director of the United Hospital Fund’s Families and Health Care Project in New York City.

Her project has prepared a much more detailed, comprehensive set of guides for family caregivers (nextstepincare.org) about issues such as home care, doctors’ visits, emergency room care, rehabilitation and what to expect during and after a hospitalization. Those materials are full of useful advice and can flesh out issues raised on the Northwestern website.

Those wanting to know more about falls can consult materials prepared by the U.S. Centers for Disease Control and Prevention and the National Institutes of Health.

For dementia, the Alzheimer’s Association and the NIH are good places to start.

As for next steps, Lindquist contemplates disseminating PlanYourLifespan more widely, translating it into Spanish if funding can be secured and possibly expanding it to include more topics.

The point is to “give seniors a voice,” she said. Now, if an older woman breaks a hip and is rushed to surgery, “loved ones run around and usually make decisions without her input — she’s usually too out of it to really weigh in. That doesn’t have to happen, if only people would consider the reality of growing older and plan ahead.”

“Dying to Know: What Patients/Families Want to Know about End of Life Care”

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“Dying to Know: What Patients/Families Want to Know about End of Life Care”

Last week, the Stanford Health Library hosted a lecture on end-of-life care, titled “Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues.”  The speaker was Stanford oncologist Dr. Kavitha Ramchandran, who spoke for about 45-minutes and answered questions for another half hour.

[Update:  The recording is now available on this webpage of the 2017 video library:]

healthlibrary.stanford.edu/lectures/2017.html

Brain Support Network volunteer Denise Dagan joined the lecture via live webcast.   Here’s her report on the highlights of the lecture:

Coincidentally, Dr. Ramchandran covered some of the same information as a couple articles Robin sent recently — the difference between hospice and palliative care, and how to communicate effectively with your doctor about treatment/procedure options.  So, I’ll only highlight a few things here, but it is well worth viewing the whole webinar, as she does speak a bit about the dying process as well, and the audience had a number of interesting questions.

For end of life care conversations, tell your doctor your personal goals for the quality of life or level of recovery you hope to have after a treatment or procedure, and ask which option will best achieve those goals.

Your family may expect you to pursue every curative therapy, while you are exhausted and just want to be able to, “eat ice cream and watch football.”  Even if the family is surprised to hear this, if that’s where you are in your journey, you need to tell your doctor.  It will change the course of the whole conversation with the doctor, and your family.

Interestingly, Dr. Ramchandran views hospice as very flexible.  She recommends it for patients needing good in-home symptom management for a month or so, when she wants them to be in really good shape for the next round of chemo.  If they are, and are willing to try the new chemo, she has them discharged from hospice and begins curative treatment again.  If they aren’t in such good shape, or choose not to continue chemo, they stay in hospice, but they are usually happy about the level of care they are receiving because it is all about making the patient as comfortable as possible.

Hospice will discharge you if your condition improves.  My Dad had Lewy Body Dementia and was in hospice twice for about two years each time.  It was a Godsend.  In between he was in a transitions program that followed his progress and ensured he was readmitted to hospice when his health declined.  Not all hospice programs are created the same.  I recommend a non-profit program.  Get recommendations from your doctor, support group members, friends and family, and interview a couple before you enroll.

Dr. Ramchandran spoke some about the dying process.  Her analogy is to think of the birthing process and a new mother’s idealized expectations about who will be there, how the family will document the event, having a doula, etc.  In reality, neither birth nor dying ever happen in quite the way you want, so you may need The Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Denise’s full notes are below.

Robin

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Denise’s Notes from

“Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues”
Stanford Health Library
March 2, 2017
Speaker:  Kavitha Ramchandran, MD, oncologist, Stanford

Disclosure is the action of making new or secret information known.  Families feel they can’t get a straight answer to, “How much time do I have?” even though doctors know information reduces anxiety. Most people do want to know what to expect about their treatment, prognosis, and especially pain. When they know, they make better decisions about how to spend that time and choices about their care.

Why don’t doctors talk about end of life?
Because it makes them uncomfortable to talk about not being able to help anymore.  It means you will die, and that’s sad, even for them.  Doctors don’t always know the prognosis.  Especially with new treatments, doctors don’t know how well it will work.

Now that you know, what comes to mind?
– What is dying process like?
– How much of a loss of control will I have over my body, my decisions, my quality of life, my pain, etc.?
– How will my treatments and death affect those I love?
– How will others react to me if I lose my hair, are unable to speak, or when I am the one who’s dying, etc.?
– Will I be isolated during treatment, hospice, or death?
– What is the meaning of my life, now that I can see the end?

Do I have a say in where I die, in having every treatment available, in treating my pain effectively, etc.?  People like to be in control.

Goals of Care / Informed consent – means does your health care meet your personal goals?
– Good health care should ensure education and understanding – ask, tell, ask should be the process for the conversation.  One problem with the way conversations usually go, is that the doctor is speaking medical-ese, and the patient does not understand.  When the patient doesn’t understand, they don’t know what questions to ask, so they are still in the dark after they talk with their doctor.  The doctor should:
– ASK what you understand about your condition,
– then have you TELL them what you understand,
– finally ASK what questions you still have.

– Another way to make sure both the doctor and patient is on the same page is to ask the patient what their expectations are/what they still want to be able to do, following a recommended treatment or procedure.

– Ask your doctor for a concrete recommendation, rather than them giving you percentages and statistics about several options.  Hold their feet to the fire for an answer of which they actually recommend.  For them to evaluate the options with your goals in mind, you need to tell them what’s important for you to be able to do after a procedure or treatment.  Without that information they are guessing at which option is best for you.

Advance Directive for Healthcare is a legal document to designate your medical decision maker, and to document code status.  It should be coupled with the POLST form for those who choose DNR, because it won’t be available with your decision maker at the place of emergency where EMTs are working.  POLST is for EMTs.  Keep it on you or display it prominently in your home.

End of Life Options Act / Death with Dignity Act is now in 5 states.  For your application to qualify, you must:
* have less than 6 months prognosis
* be able to administer the life-ending medication on your own
* have the approval of two physicians
* be over 18-years-old
* be of sound mind

Hospice provides care for patients who are seriously ill.  If they say I do not want to be in pain and will take sedation not to be in pain, it is hospice’s highest priority to do that, even if the patient’s life is somewhat shortened in the process.  It is called palliative sedation.

Palliative care has been equated with end of life/hospice care, but it should not be.  It is caring for anyone with serious illness following or during active treatment.

Palliative care early on improves quality of life, and improves survival.  Probably because, if you’re focused on the next curative treatment you may not tell the doctor that you’re not sleeping, or other peripheral symptoms.  Treating these bothersome peripheral symptoms helps you be strong enough for the curative therapy (chemo, surgery, bone marrow transplant, etc.)

Hospice is one arm of palliative care.  To qualify you must:
* have a prognosis of 6 months or less
* refuse curative treatment (although all other chronic or acute illness is treated)
* agree that pain & symptom management (of all your ailments) is the goal
* understand it doesn’t change your insurance
* understand it is not a place, but those who come to you wherever you are (home, skilled nursing, palliative unit at the hospital)

Good healthcare walks with you from curative & palliative care, followed by hospice care, then death and family bereavement care.

The Dying Process:
Think of the birthing process and all a new mother’s expectation of who will be there, filming the event, a doula, etc.  Neither birth, nor dying ever happen in quite the way you want, so you may need the Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Give me the details…  What will I experience?  Is it be scary?  How will it effect my kids, my husband? Sometimes the patient doesn’t want to know, but the spouse does. Doctors only know so much, but they can answer some questions.

People are most afraid of pain.  It can usually be controlled, 80% of the time.

There may also be secretions, restlessness, confusion.  It can be upsetting for family members.  Its very sad to see the person they knew slipping away.

What is the body doing?
– Shutting down:  skin feels cool, clammy; decreased urination, no appetite, no need for fluids; being in bed is normal; sleeping a lot is normal

Question & Answer:

Can EMS check for troponin levels to tell if it’s a heart attack?
Hospital, because it takes time and a lab.

Death with dignity act and whether starving yourself is a peaceful way to die if you can’t get the prescription?
Each person has their own view of what is suffering, so they can stop eating.  That can take weeks, especially if they’ve just been in the hospital with loads of fluids from IVs.  Those who use the death with dignity act don’t want the dying process.  They want control over the timing of their own death.  If they ask for the prescription because they are afraid of pain the doctor should address how well pain can be managed in their situation.

Is palliative care a new specialty?  Why is palliative care sometimes offered in the hospital and sometimes not?
Palliative care is the new ‘old’ medicine is, “Care always, cure sometimes.”  A palliative care clinic is a new thing.

What is the name of the most popular aid in dying medication today, who makes it, and how do you order it?
California is trying a few different versions because some are too expensive for insurances to be willing to cover it.  Only a few pharmacies are filling it, right now.

Is there a book on how to counsel families through an advance directive?
The conversation project website walks you through preparing an advance directive.  The letter project has patients and families write a letter to their doctor about their wishes.
Hard choices for loving families is a good book.

It’s a burden to loved ones if you have a serious illness and are being cared for at home.  The circumstances can be undignified.
Alternative is skilled nursing, but asking the patient if they mind being in the middle of the living room in a hospital bed, etc. will help get everyone on the same page.  Sometimes patients continue to try curative therapies because they feel the family expects them to.  Having a frank conversation about what the patient wants is important.

If 80% of pain can be managed in the dying process, what about the 20%?
Admission to a clinic for pain specifically, an epidural, if those fail they use sedation which hastens death somewhat.

Does palliative sedation need to be in an advance directive?
No but the conversation about sedation should happen with family so they know your wishes as your decision maker.  That helps the doctor, too, because they don’t want to assume one way or the other.

So many people are living into their 90’s and they keep coming into the ER, so how do you handle that?
It would be nice to re-examine home-based care.  That is why some doctors recommend hospice, because it brings care to your home.  When the same person has been into the ER a few times, it usually means things are not going well at home, so setting up hospice for them can really help them feel better and stay out of the ER with that added expense and hassle.  The POLST form has multiple components but it is basically a home-based DNR.  It must be signed by a doctor or nurse practitioner.

Are all physicians bound by the end of life options act?
No.  It is hard to find a doctor that will do it.  Most clinics have designated one physician to handle all requests because most don’t want to deal with it.  The Ethics Team can start the process for you at Stanford.

Who qualifies for palliative care?
People with significant symptom management need, especially with a psycho-social need with their family. A palliative care team includes doctors, nurses, social workers, clergy, psychologists

Have people stopped eating and drinking to hasten the end of their life, or an overdose of morphine?
Yes, she has known people who have stopped nourishment, but most patients at Stanford are looking for cures.  Oncology doctors have been overdosing morphine for decades before the End of Life Options Act was passed.  She believes in having the conversations with families early and often to meet the family’s specific goals.

When people change settings you lose a team you trust and have to adjust to a new healthcare team.
Yes.  Sometimes nobody is leading the team.  The speaker asks patients who their point of trust in the new place.  Sometimes it’s a nurse practitioner, but someone who keeps track of their care and can communicate with the facility.

Can you request palliative care in the hospital or at home before hospice.
Yes.  Hospice agencies may do the palliative care at home (bridge programs) but they may not be able to do as much as you want them to do under that type of program.

If you develop a urinary tract infection under hospice, will they treat it and take you go back to the hospital?
Yes, they would treat it because that would make the patient feel better.  They would probably not take you back to the hospital unless treatment at home isn’t working.  Hospice will not treat the underlying diagnosis for the hospice care (cancer, heart failure, etc.) Hospice is not a one-way street.  If you improve you will be discharged from hospice.  If/when you decline again, you will be readmitted. Average time in hospice is 3-4 days because people are reluctant to admit they are nearing death.  It should, instead, be the best home-based symptom management.

Friend alone with stage four cancer who knows nothing about palliative care.  How to tell him?
He should ask his primary care physician for a palliative care referral.  The speaker’s clinic prefers to begin care early on in cancer treatment so they know them throughout the course of their disease treatment.  Familiarity improves palliative care.