Video TIPS

Life @fter Diagnosis

Written by Susanna Taddei Edited by Bill Cunningham Narrated in Spanish by Ibetti Pérez (COMING SOON)

Video TIPS
The information presented in here should NOT be considered medical (or Legal) advice. No additions or changes in treatment should be considered without consulting your Health Care Team first!

Thank you!
To download these tips and more detailed information, go to www.lifeattheend.org

“In memoriam” For Lucrecia (Sep16, 1956 – Jun 22, 2009) who taught me Welcome to our presentation! to be the best that I could be and to love this country as my own!
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TIPS

Open the video to full page and select HD for better viewing

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Pages will automatically scroll down every 30 to 40 seconds To download detailed ppt presentation of all the info presented here, go to the documentary website: www.lifeattheend.org

Index
After the initial shock … some general TIPS
Surfing the Web About treatments Medication Factsheets Questions to keep in mind when talking to your Health Care Team

Pag
4-5
6 7 8 9

Tips for decreasing Fatigue
Important information about Off-Label Drugs & Clinical Trials Talking to your Insurance – Fighting a Claim What is … Cobra – Disability - Hospice Legal Documents

10
11 12 13 14-17

TAXES: From the IRS
AT (Assistive Technology) Bereavement Final thoughts … Acknowledgments

18
19 20 21 22

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After the initial shock … some general TIPS
1. Google the name of your illness – stick to well known, reputable sites 2. Find trustworthy non-profit organizations directly related to your type of
illness

3. Gov’t websites, such as National Cancer Institute, NIH, Clinical Trials, etc.,
will always be a valuable source of information

4. Get a specialist on your team. Insurance companies normally will cover both
a generalist and a specialist

5. If you are going to start going in and out of hospitals or doctor’s offices, protect yourself from
infections. Wash your hands constantly

6. Get a second and third opinion. It can be in person or via mail. Your doctor can help sending files
to another hospital

7. You can open a personal FEDEX account for free to send CDs, medical reports back and even
sample tissue or blood

8. ldentify 2 or 3 major Treatment Centers for your type of illness, go to their web site and subscribe
to their newsletters

9. Check local listings for support groups available in your area. If none are near your home, check
the internet for online support groups.

10. Clinical Trials are not a last resource. Patients should look into it at the beginning of their
diagnosis. Always ask your doctor about trials and cancer vaccines
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After the initial shock (cont.)
11. If an infection is recurrent, have an Infectious Disease Doctor
check all caregivers who come in contact with the patient

12. Always prepare a list of questions to ask your doctor if you are
considering treatment

13. Do not add supplements to your diet without checking with your
doctor. It’s important to be aware of Drug/Food interactions during treatment

14. If the patient is having problems with swollen extremities, check with the doctor immediately
as this could be a blood clot.

15. Drink fluids before your blood work, MRI with contrast, etc. unless otherwise specified, so it will
be easier to prick your veins

16. Learn to read your scans/reports - It will help you understand your illness 17. Ask for a copy of your reports and scans on CDs. You will be able to make copies in your
computer later

18. Never take the first “no” you receive from the insurance company as final. Get a written
explanation and don’t be shy about filing a claim

19. Have your legal documents in order! Notify at least two people where you keep them.
Include a list of all your internet login ID / passwords
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Surfing the Web …
20. Check the most reliable sites you can think of and start surfing. Here are some good examples:

• • • • •

www.Chemocare.com www.nih.gov/ www.webmed.com www.medpagetoday.com http://www.cancersupportcommunity.org

• • • • •

www.caregiver.com www.clinicaltrials.gov www.cancer.org www.sammonspreston.com www.RxHope.com

21. Also, look into the top rated hospitals for your type of illness and remember to subscribe to their newsletters. Some examples:  MD Anderson - TX  The Preston Brain Tumor Center at Duke  John Hopkins Hospital  Sylvester Comprehensive Cancer Center - Miami 22. TRAVEL: To use some of the following services, you might need to contact the National Cancer Info Center at 800-227-2345 to receive an ID Number.
• • • • • Air Care Alliance (888-260-9707) The Corporate Angel Network (866-328-1313) The Candlelighters Childhood Cancer Foundation maintains a list of additional organizations offering assistance for treatment-related travel. The National Association of Hospital Hospitality Houses (800-542-9730) Ronald McDonald House Charities (630-623-7048) offer free or reduced-cost lodging for families of seriously ill children receiving treatment
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About treatments …
23. Clinical Trials are not a last resource. Patients should look into it at the beginning of their diagnosis. Later on might be too late and harder to qualify 24. Most cancer vaccines need tumor tissue. Talk to your doctor before surgery about storing tumor tissue 25. Do not add any kind of supplements to your diet without checking with your doctor or other health care providers. 26. Some medications can act as a sensitizer for radiation (or other drugs). Ask your doctor if you should take them as close as possible to your Radiation appointment and be aware of Drugs/food interactions during treatment – check www.drugs.com 27. Check all the info re. handling food and eating out during chemo or any other treatment. Some drugs can really affect your GI tracks,. Check www.cancer.org for more tips 28. If an infection is recurrent, have an Infectious Disease Doctor check all caregivers who come in contact with the patient 29. If the patient is having problems with swollen extremities, check with the doctor immediately, could be a blood clot.

30. Drink fluids before you a blood work, MRI with contrast, etc. unless otherwise specified, so it will be easier to prick the veins
31. Always ask for a copy of your reports and scans on a CD – Normally they are free and the CD’s you can get right after the test

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32. Medication’s factsheet
An important step to preventing problems is for patients and caregivers to understand what medication-related problems are and to recognize the signs and symptoms of actual and potential MRPs., which may include:
          

The Basics of Safe Medication Use

excessive drowsiness confusion depression delirium insomnia Parkinson’s-like symptoms incontinence muscle weakness loss of appetite falls and fractures changes in speech and memory

When these symptoms appear, they should be considered “red flags” to caregivers and that an MRP may be happening. Call your Health Care provider as soon as you can.

Keep updated lists of all medicines, both for yourself and for the person you are caring for (Or take pictures with your cell phone) Nurses in doctors’ offices and pharmacists can and should instruct you if you need to administer injectable medications If you are caring for someone with cognitive or memory problems, be sure all medications are safely stored away Do not mix different medications together in one container Medicines should be stored in a cool, dry area. Do not store your medications in the medicine cabinet in the bathroom or in the kitchen Consider keeping refrigerated medications in a plastic box or container. Expired medications (there are expiration dates on all of your medications) and any medication that your doctor has discontinued should be discarded. Never share or give your medications to another person

To read the complete article, go to: http://www.caregiver.org/
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Questions to keep in mind …
33. Always prepare a list of questions you may want to ask your doctor/oncologist if you are considering therapy and write everything down. You can get a good sample list from www.temodar.com
• • • • • • • • What type and stage of cancer (or other illness) do I have? What is the purpose of treatment for my type of cancer/illness? How will therapy be administered? For how many weeks? What side effects may occur and how are they managed? Will therapy affect my sex life or my ability to have children? Do I need to take any special precautions, like avoiding people with infectious diseases? Do I need a special diet during or after my treatment? What are some of the support groups I can turn to during treatment?

34. How to help your loved one successfully negotiate going from hospital to home:
• • • • • • • • • • • Be an active presence in the discharge planning process. Don’t be afraid to ask any kind of questions Make sure you understand why your loved one was in the hospital. Plan to provide extra help and support to your loved one during the recovery period. Understand what symptoms your loved one should be monitored for, and who to call if you have concerns. Make sure the discharge instructions are clear regarding medications and AT (assisted Technology) needs (Wheelchairs, canes, shower stools, etc.) Generally, it is best to pick the simplest product available to meet the need. Simpler devices are often easier to use, less expensive, and easier to repair and maintain than more complex devices. Ask experts that provide care to your loved one, like rehabilitation specialists or physical and occupational therapists, about which type of technology might be best. Ask other people (or support groups on line) with disabilities what products they have found to be helpful. Prepare the home for your loved one's recovery. Understand what home health / hospice services will be provided Make sure follow-up has been arranged with a primary care doctor or other outpatient health provider.

35. AND ALWAYS talk to a Social Worker (or Nurse). Best help you’ll find!
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36. Tips for decreasing Fatigue

Drink plenty of fluids .Dehydration can make fatigue worse. Be sure to get at least 8 cups of fluid each day. If you are losing weight, be sure to include some fluids that have calories, such as juices or milk. Make sure you get enough rest: take several naps or rest breaks during the day instead of 1 long rest, plan your day to include rest breaks, make rest time special with a good book in a comfortable chair or a favorite video with a friend. Ask you doctor if AMBIEN or similar sleeping medications can help you get a good night sleep. Try easier or shorter versions of your usual activities; don't push yourself to do more than you can manage. Ask for a referral to a dietitian who can work with you to choose the best diet for you. Avoid eating sugary foods. These foods give you a quick energy boost but it wears off and you will be even more tired afterward.

Try eating some protein, fat, and/or fiber with each meal and snack. Protein, fat, and fiber can help keep blood sugar more stable. This will give you a more sustained feeling of energy from the food you eat. For example instead of eating 2 pieces of fruit, try eating 1 piece plus a small handful of walnuts, almonds, peanuts, or other nuts.
Ask your doctor if prescription drugs, such as RITALIN or PROVIGIL,could help. For more info you can also check: Tips for Making the Most of Limited Energy http://www.cfids.org/cfidslink/2008/110706.asp - From the Chronic Fatigue Syndrome Association
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 

Important info about drugs & clinical trials
37. OFF-LABEL DRUGS: If a chemotherapy drug is approved for treating one type of cancer, but is used to treat a different cancer, it is off-label use. Off-label is also called "non-approved" or "unapproved" use of a drug. State lawmakers have passed laws that require coverage of off-label drug use for cancer treatment when the use is documented in certain authoritative drug reference books or in the medical literature. Always fight any insurance denial about it!

38. How clinical trials are covered by State

AZ CA MD NH VA

AZ CA GA IL LA MD NH NM RI VA

AZ CA CT GA IL LA MD NH NM RI VA

AZ CA IL LA MD NH NM RI VA

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39. When talking to your Insurance …
• • • • • • Don’t assume that the first “NO” you receive is final and insist on a written explanation. Read your policy carefully to determine if the claim was legitimately denied. Do not accept filing errors as ground for refusal. Look for violations or mistakes on their side Do your own research to support your claim. Ask your insurance agent or group administrator at work for support. Check https://www.healthcare.gov/ to become familiar with the Health Insurance Marketplace

40. Documents to prepare if your Insurance Company denies coverage:
• A letter of appeal (or Medical Necessity) signed by your doctor
• Check the medication website – They might have a copy of the FDA Approval- which you
will need - plus specific instructions on how to better address the insurance denial

• Include any statistical support regarding the benefits of the drug, clinical studies or publications • You can do your own research on the internet and take copies of publications to your doctor's
office so they can fax it together with all the other docs

• Medical Documentation: Initial History and Physical, Doctor's Notes, Pathology reports / scans /
mri / records of prior treatments (if any) and response, relevant labs, etc.
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What is ….
41. COBRA The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who
lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. Qualified individuals may be required to pay the entire premium for coverage up to 102 percent of the cost to the plan. For more info: http://www.dol.gov/dol/topic/health-plans/cobra.htm

42. Disability

Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not. Certain family members of disabled workers also can receive money from Social Security. Go to Social Security Adult Disability Web Site for more info.

43. Hospice is a special concept of care designed to provide comfort and support to
patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. www.hospicefoundation.org • • • • • • If thinking about hospice, always remember you need a lot of time to prepare and take care of the paperwork You might need to learn to use their equipment Need to be able to understand how they work. Talk to their Social Workers until all the rules and regulations are clear to you Even if you will depend on their doctors, try to keep yours engaged in some way, even if its only via email with the Specialist that helped you during the whole process Hospice does not have to be forever and does not imply you will not be treated. Talk about your medical options with their doctors and nurses You can go in & out of Hospice care depending on your needs and health
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44. Legal Documents
• • Durable Power of Attorney (which expires the minute a person dies) Last Testament or Will


• • • • •

Living Will
Health Care Surrogate (also called Health Care Proxy) For an excellent/detailed document about End of Life Decisions, please check the FIVE WISHES form on-line http://www.agingwithdignity.org/five-wishes.php Or in some States you can choose to have a Health Care or Medical Power of Attorney which combines the Living Will and Health Care Surrogate or Proxy) Pre-need Guardianship, in case a court determines you are unable to handle your medical and financial decisions HIPPA Release Form – Some hospitals might request this in addition to Health Care Surrogate


• •

Co-Parenting Agreement
Property titled as Joint Tenants With Rights of Survivorship and joint bank accounts so your assets can pass directly to the beneficiaries after death, avoiding probate Anatomical Donation Form if you want to donate your body to an institution. Check with local medical schools

DNR Form – which does not mean "do not treat." Rather, it means only that CPR will not be performed.
Other treatments (for example, antibiotic therapy, transfusions, dialysis, or use of a ventilator) that may prolong life can still be provided. Treatment that keeps the person free of pain and comfortable (called palliative care) should always be given.
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45. When organizing your legal docs ...
• Make sure all documents are compliant with your State regulations. Normally you can find
compliant forms at your State of Residence Bar Associations. Just Google, i.e. Florida Bar Association and then search for their forms

• You can also check www.ilrg.com/forms/ they have compliant forms for every State. If you
have assets in different states or other countries check with your Accountant, they are always a good source of information about these issues

• Even if you have a General Power of Attorney, most financial institutions will require that you
and the patient sign their own custom forms. Check with them ASAP.

• Have your property and bank accounts titled as Joint Tenants with Rights of Survivorship so
your assets can pass directly to the beneficiaries after death and they can avoid probate which can be long and expensive. Consider setting up a Trust.

• Make sure you don’t name a beneficiary in your Will for a 401(k) account or any other savings
& retirement account and have another beneficiary in the bank’s file. The Bank’s info will overwrite the Will.

• If you have been diagnose with a terminal illness and have debts, check with the institutions
you owe money to. Some institutions might exonerate you if you get cancer or another debilitating illness that would not allow you to work
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46. When organizing your legal docs (cont.)
• Very Important: If you are not married or don’t have your legal affairs
in order, please make sure you have at least a Health Care Surrogate form and Living Will to ensure that your wishes about your healthcare will be followed

• To make sure that your documents are accepted in every state, especially if you are
travelling, have two witnesses sign and notarize them.

• The Notary Public can be one of the witnesses • Try to convey your wishes as clearly as possible to your close family members and loved
ones; ask them to respect your directives and not to change them without extremely serious reasons – this is your life/death and not theirs

• Make sure at least two people (family or friends) know where you keep your legal
documents and login information (on-line passwords) for ALL your internet accounts

• AND ALWAYS talk to your attorney about all the legal documents you intend to sign

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46. You are an US Citizen and have relatives in Cuba?
 You need to talk with your lawyers in advance re. the naming of a court appointed guardian (there are only 5 attorneys in Miami authorized to represent Cuban citizens) and how the restricted Cuban accounts work  Basically, there is no other option due to the US Cuban embargo. This Guardian will charge the Cuban citizen a $350 p/hour fee, present an invoice directly to the Court (you can ask for a copy) and will charge a percentage on the monies sent to Cuba.  The inheritance could easily be reduced by up to 50% of the original amount, mostly due to the Guardian keeping approximately 40% in fees and the rest divided between Western Union and the Cuban Government foreign exchange fee.  Make sure your lawyer explains to you this process and ask for other options. It might save you a lot of time and money to prepare a Will with all of this in mind. Ask also to see the list of Guardians and Google their names before choosing one.  Make sure you understand what are the restricted accounts in general and how they work (for Miami-Dade county)  Make sure the bank you choose to open an account will be able to handle BOTH cash and investment accounts as restricted

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47. Taxes: What you can deduct

(From the IRS Web site)

You can deduct only the part of your medical and dental expenses that is more than 7.5% of your adjusted gross income shown on Form 1040, line 38.
For more detailed information, see Publication 502, but here are some more examples: • Medical Equipment Expenses: Artificial limbs, eyeglasses, and hearing aids. The part of the cost of Braille
books and magazines that is more than the price of regular printed editions. Cost and repair of special telephone equipment for hearing-impaired persons. Cost of equipment that displays the audio part of television programs as subtitles for hearing-impaired persons. Cost and maintenance of a wheelchair. Cost and care of a guide dog. • • • Premiums for qualified long-term care insurance, up to certain amounts. The cost of drugs is deductible only for drugs that require a prescription, except for insulin. Other Professional Medical expenses include fees paid to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, etc.


• • •

Also included are payments for hospital services, qualified long–term care services, nursing

services, and laboratory fees.
Payments for acupuncture treatments or inpatient treatment at a center for alcohol or drug addiction You can include in medical expenses cost of medical supplies such as bandages use to cover torn skin. The cost of other items such as false teeth, prescription eyeglasses or contact lenses, laser eye surgery, hearing aids, crutches, wheelchairs, and guide dogs for the blind or deaf are deductible medical expenses.

• •

Transportation costs primarily for and essential to medical care qualify as medical expenses. Incidental cost of meals and lodging charged by the hospital or similar institution if your main reason for
being there is to receive medical care. You can include in medical expenses amounts you pay for special equipment installed in a home, or for improvements, if their main purpose is medical care for you, your spouse, or your dependent.
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48. AT (Assistive Technology)
From Caregiver.org: Sometimes called assistive devices, independent living aids, and adaptive equipment, assistive technology (AT) can help your loved one live more independently before or during Hospice. It may also make your job as a caregiver easier! Many manufacturers provide nowadays a wide range of products and devices. It can be confusing, however, to determine which products might be right for your loved one. Here are a few basic tips to help you in this task:

• • • • •

Focus on the actual tasks your loved one wants or needs to do when choosing devices.
Generally, it is best to pick the simplest product available to meet the need. Simpler devices are often easier to use, less expensive, and easier to repair and maintain than more complex devices. Ask experts that provide care to your loved one, like rehabilitation specialists or physical and occupational therapists, about which type of technology might be best. Ask other people (or support groups on line) with disabilities what products they have found to be helpful. Ask to use the device on a trial basis to see if it is truly going to meet your loved one’s needs. The device needs to be comfortable, attractive, and simple to use. The following website provides comparisons of assistive devices and is a good resource for consumers trying to decide which equipment and devices to purchase: Technology for Long-Term Care(213) 371-2354 www.techforltc.org

49. Where to buy it

• • • •

http://www.sammonspreston.com/
http://www.biorelief.com/ http://www.dynamic-living.com/index/ http://www.goldviolin.com/default.asp http://www.medicalert.org/home/
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50. Bereavement
• • • • • • • Grief is a complex and very individual process It could start before losing your loved one (Anticipatory Grief) “First” dates (Holidays, anniversary, Birthday) will always be difficult. Do not ignored them, but also don’t expect family and friends to be aware of such dates This is a good time to get a support group for you, if you have not done so yet. There are many online support groups specific to your kind of loss Grief is manifested in many ways, emotionally an physically. There is no right way or timeframe Try to eat regular meals, exercise and call your friends and family if you need company We cannot control where or when we grieve. Grief is an uneven process, a roller coaster with no timeline.


• •

We never fully detach from those who have died, but over time most people learn to live with loss.
If you were a caregiver, you might face a double loss: The loss of your loved one and the loss of your ROLE as a caregiver If you feel overwhelmed and are not making any kind of progress, please consult a physician, you might be suffering from complicated grief (which is a debilitating disorder associated with important negative health consequences), major depression or post-traumatic stress disorder. For more info, you can go to:  http://www.samhsa.gov/mentalhealth/anxiety_grief.pdf  http://www.americanhospice.org/  http://www.hospicefoundation.org
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Final Thoughts
Never stop talking to other patients or caregivers and make sure you check on-line support groups – they are the best source of information

Ask for a Social worker at the hospital if you feel you need help navigating the health care system and insurance world!

Taking care of your health is a Team effort! Do not take for granted that all members of the team are in communication, so make sure you keep them all up dated

Volunteer! You might acquire very important skills that will help you in the future

You will be surprised how many people are willing to help, but you need to have your legal documents in order

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Acknowledgements

I will be forever grateful to …
• The healthcare providers at the Cancer Support Community , Mercy Hospital & Sylvester • The BRAINTMR List, an infinite source of information • HealthyState.org and Jenn Molina for making the documentary Life@ the End • My family , my friends and the incredible Merry Widows Club! • Ibetti, for loving me so much, in spite of ALL my character flaws!

www.lifeattheend.org

Is a 30 min. documentary that looks at three stories of human connection - A woman and her partner; a young couple raising kids; and a grandmother, Mom, and teenage daughter – as they experience the challenges and separation that come at the end of life. www.lifeattheend.org

RELEASE AND WAIVER OF LIABLILITY: I hereby release the State of Florida, the Board of Governors, the University of South Florida, WUSF Public Broadcasting, and their officers, employees and agents (hereinafter collectively “USF”) from all actions, damages , or claims which I or my assigns may have against them which may be incurred as a result of the information presented in this Guide.
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