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END OF LIFE: Preparing for the Future

Your loved one may not yet be in this sunset stage of her life, but YOU should begin to think about whatever the future may bring, so you will be prepared for any eventuality.

Let’s get the numbers out of the way. 

According to a 2010 funeral price survey by the National Funeral Directors Association, the U.S. average cost for an adult funeral is $7,775.00, including casket and vault. Cemetery costs including grave stone marker . Therefore the average traditional funeral and burial will run roughly around $,775.00. Cremation runs from about $1,000.00 (simple) up to $10,000. (full service with memorial service and burial.)

This can be a serious hardship on the family, unless there has been some planning ahead. Your loved one will certainly want to spare her family any financial burden.

You may feel it is too early in your loved one’s diagnosis to even consider thinking about these things. My recommendation is to begin to research options now, rather than put it off and have to do it when you are overwhelmed fighting grief and mental numbness at a later time. Do it now while your thinking is clear. 

[Visit http://www.funeralwise.com, or Google search the topic]

Learn that costs can usually be negotiated, and many funeral homes will accept installment arrangements.

Your medical insurance will not cover funeral costs. You may want to research supplemental low benefit life insurance options specifically for this purpose.

I know this is hard. This is tough love. We are not culturally accustomed to address these issues. We “think young” in this country. These realities are uncomfortable to talk about. But that is exactly why we—as a nation—are so unprepared for these eventualities. And the financial consequences can be devastating. Be the Rock. Do this now. Get information. .

 

A Caregiver’s Medical Support Role

Caregivers you absolutely must be learning about the medications.

As your patient’s loved one or medical caregiver, you need to be informed about the medications that they are receiving and that you will be administering, for two critically important reasons.

1. The caregiving partner needs to monitor the side effects for the cancer patient 

Assume the cancer patient is suffering from diarrhea, or nausea, and terrible headaches after a round of chemotherapy treatment. The cancer patient is in no condition to assess whether or not the situation is critical and a run to the Emergency Room / a call to your Oncologist is warranted.

But, to make this decision on the patient’s behalf, the caregiver needs to be informed of the potential side effects and their severity that are listed in the pharmacological description of the the medication. Ask questions, get help; but ultimately you are the only one who is home along face-to-face with your loved one.

So, where does the caregiver get this kind of information, you ask? The information sources that I found to be the most helpful were:

  • The Internet {see the sources listed in order of informational importance and easy of understanding in Exhibit 4 of Cancer Caregiver Roles } Especially useful were the sources listed as Five Star. I would encourage caregivers to become familiar with the format and information of: WebMD, MedicineNet, and the American Cancer Society 
  • The Pharmacological Description of any medication provided by the pharmacy along with your prescription; these are very informative and will detail the potential side effects.

If the caregiver or patient have any questions, or cannot reach the Oncologist, a call to the Pharmacist where the prescription was filled may be helpful. Remember, you are not alone! Your Oncologist, Nurse Practitioner, or your Pharmacist are there to be of help to you. So, do not hesitate to seek help – your loved one depends on it.

The caregiver needs to be informed to be able to provide helpful information or to ask intelligent questions in meetings with the Oncologist or Oncology team. The caregiver needs to become the semi-pro, home nursing, player to be useful to the Oncologist, the team, and the patient.

Many times your patient will not be in an alert physical or mental state to follow and understand the office conversations, or to formulate questions. Your loved one/patient relies on YOU to be figure out what needs to be asked. The caregiver may surely want to make notes during meetings for reference at home later on down the road.

it is sometimes hard to remember and transfer the technical directions given in the Oncologist’s office back at home, where the passage of a few days may obscure your clarity of understanding that you seemed to experience in the office. This is when taking notes is essential. 

Tracking your patient's medical updates is essential

Tracking your patient’s medical updates is essential

The caregiver is in a unique position to help the Oncology team to fully understand the full holistic needs of their patient. Remember, your Oncologist may see your loved one only once or twice a month (with additional time for thinking, recording notes, and research); but you live with your patient - 24/7!

The caregiver plays a crucial role here. You must implement the day-to-day parts of the oncology treatment plan. Long time direct contact and full time, full range assistance of your loved on can greatly support and inform the Medical Team and improve your loved one’s quality of care.

And remember, NEVER be afraid to speak up or ask for help! 

Managing The Time & Dosage of Medication

Do you know how to successfully implement a treatment plan at home for your patient or loved on?

The Caregiver is the arm’s length extension of your Oncologist and Oncology Team – at your loved one’s home, on a 24/7 basis.

Image found on www.aarp.org

Image found on http://www.aarp.org

If you and your patient/partner are on regiments of treatments, you will notice things like the need to ingest multiple pills at different times during the day. At one point, my Cancer Partner was consuming 16 DIFFERENT capsules, at different times during the day:

Tykerb in the morning before breakfast, supplemental vitamins with breakfast, anti-inflammatory steroids at four intervals during the day, and antidepressants plus sleep aids in the evening, with an occasional nausea drug for diarrhea and/or a pain suppressant. 

My partner found it very useful to use 3 weekly pill boxes that can be obtained at any commercial pharmacy or drug store. These separate pill boxes by day of the week: S – M – T – W – TH – F -S. We used only for early morning capsules, another for pills to be taken during the day, and the other to hold pills to be taken in the evening before bedtime. It was ESSENTIAL for keeping the pills sorted, and related to the time they were ingested.

Most pill boxes will come labeled by day, and you have several color choices.

Most pill boxes will come labeled by day, and you have several color choices.

If you do not use pill boxes to sort your medications, IT IS ESSENTIAL TO RECORD and check-off what was taken, and when it was taken. This is extremely important - I cannot stress this enough. If the Caregiver has to leave the home and go to work, being absent when these medications must be ingested, it is vital for the patient not to “forget” what has been taken, and what still needs to be ingested. The pill boxes are a helpful tool in preventing the chance of an overdoes, which would result if the patient took more that the prescribed amount of any of their medications. This could easily becoming a life threatening situation, if not handled accurately and seriously.

I suggest you keep the weekly pill boxes to sort out medications for each day, but is also important to develop a schedule of medications  to see what has been ingested and what is yet to come.

My partner used a white board to record what and when she took her medications. When the medications changed, it was easy to erase the old and to then write in the new. It not serve well as a permanent record, however, so I would suggest creating your own check-off system, laid out by each day and time of day, which will give you the permanent record to keep.

How do you keep track of your patients/loved one’s medication dosage and schedule?

The Importance of Calendar Management

Breaking up the normal cancer routines is always hard on both the Caregiving Partner and the Cancer Patient; transportation must be arranged, usually the patient must dress to go out, which also might include bathing or clean up.

It is very difficult – like herding cats – to obtain multiple appointments from different physician offices if you have to meet with more than

one physician (or more) in more than one location, but the effort is worth attempting for the p[patient's sake if the outcome is multiple visits in one day. It may also help the patient's emotional and physical recovery to complete the hassle and travel of all these visits.

But the lesson of this section is to OBTAIN A CALENDAR (yes, caps are necessary here.) Use whatever type of scheduler you are comfortable with, whether that be a day-timer, your laptop calendar, or the calendar on your phone - you just need to have something. It is very difficult to reschedule an overlooked or forgotten appointment, sometimes taking months to find the next opening in the physician's schedule.

Another use of this office visit record  is for verification when you receive the explanation of benefits [EOB] from your insurance company. The first column on the insurance company EOB is the ‘Date of Service’ provided to your patient partner.

Here’s an an example from my personal experience:

I noted a discrepancy on the insurance company EOB indicating that service was recorded to have been provided at one downtown

Photo: info.medtrandirect.com

Photo: info.medtrandirect.com

hospital location at the same time that chemotherapy (Here’s my post on Chemotherapy) treatment was being provided at a Cancer Clinic in another town. Upon investigation, the service provided was coded to show a visit to the birthing unit of the hospital. It turned out to be a coding and posting error from the hospital, but it was worth several thousand dollars (YIKES!) to our family as the insured party.

Always remember that computers and accounting departments can make mistakes.  It is important to have a permanent calendar record for verification when you look over your medical insurance records.

A final matter related to Calendar Management is that you may need a record of the number of times and locations where treatments were received for Income Tax purposes. Mileage to-and-from a medical treatment is a deductible medical expense, and you may need your calendar as a record of your medical treatments, as information you can use to assist you to find evidentiary receipts for this deduction.

Frequently Asked Questions

question-markI wrote Cancer Caregiver Roles to help answer questions. I am here to shed light on three major roles a Caregiver must assume once their loved one/patient is diagnosed. This week’s post is a little less about Caregiving and a little more about why I do what I do. Feel free to leave me your comments or any additional questions that you may have about my work.

  • Q: What inspired you to write this book?   

From p. 2 Dedication:  “to honor Family Caregivers—-that exhausting, noble, deepest expression of human love.   And to honor my deceased wife Susan Marie.”  It is my hope that her stories built into the text will “…teach and inspire them to become more loving and more proficient in their new life journey together.” When I was asked this question in another interview,  I remember concluding the response like this.   Truth be told,  I really don’t remember any noble or altruistic motivation when I sat down to write.  I only remember I HAD TO WRITE this book. Maybe it was a lifetime of teaching that subliminally drove me to share our experiences with other newly diagnosed cancer patients. Teachers are supposed to prepare their students for what is to come, and suggest ways they can succeed or survive. The key line in a Commencement Address that I gave at the University of Colorado was ” I hope we have taught you how to live, as well as how to make a living.”  Maybe the Teacher experiences took over and forced the authorship of this book.

  • Q: Who did you write this book for?  

I had in mind the newly diagnosed cancer patient—maybe in mid-life, who has the most to lose financially.  When we first went to the Cancer Center for chemo infusion in 2001 almost everyone in the room was from the older geriatric generation. I remember looking around the room during our last chemo in 2009 maybe a third of the patients were in their 30′s to 50′s.  Many sat tubed up to the chemo bags, with children or todlers playing at their feet or coloring in books.  Sometimes dad was there walking out in the garden with one or two of the children. Cancer diagnosis is coming to a much younger generation…and these usually have the tightest resources.  If mom is going to be here for 3 – 4 hours, arrangements have to be made for children.

This book was written for CANCER patients, focusing on the definitions, treatments and diagnoses particular to the cancer journey.  But it applies to ANY debilitating and progressive disease—MS, Diabetis, rheumatoid arthritis, ALS, …

It replicate and use  the same diagnostic procedures, and caregiving requisites. Only the definitions and  tretments are specific to cancer.  And the chapters on LAUGHTER (pp 73….) and EPILOGUE on END OF LIFE are universal in their applications.

  • Q: Did you find it difficult to relive some of your past experiences when writing?

Of course. There were many times I stopped typing to just read over what I had just written, and pray or cry.  But my experience with the dying as a volunteer with Hospice has taught me that GRIEF is the internal black hole in your heart, stemming from the deep sense of loss.  You can’t get around grief;  you have to get through it.  And MOURNING is the outward expression of grief.  It makes you face the realities you have experienced….and appreciate the final gifts you each gave to each other.   Only the expression of grief–mourning–is cathartic, and gets you through it.  This book allowed me to chronicle our final gifts to each other, and as such, it was tremendously relieving.

  • Q: What tips can you give us for time management?     

Read pp. 68 – 72.   This question sounds so academic: “Time management.” The reality of caregiving involves a deeper and swirling involvement in just  holding everything together. The best metaphors I can think of for cancer are a swirling vortex sucking you into oblivion, or falling into an helpful_tips_graphicunexpected quicksand where you cannot feel any bottom, and you feel yourself sinking relentlessly until the mud covers your face…..and you cannot breathe.  The best tip I can give is to remain in touch with a close group of friends, or someone you can call to talk to.  It becomes a planned event just to get to the grocery store for food.

I can remember being told to take breaks, or get respite care.  I would think of this as a diarrhea episode would hit…and wonder when would you get time for respite care? Caregiving easily becomes 24/7 attention and surveillance. There are no breaks, because there are no breaks in life, and this is your life now shared with your partner.  And my best reminder would be to join a Support Group that meets on a regular basis, so your participation can be planned.  As for tips, read the list on p.69.

  • Q: What do you hope readers take away from this title?

The bottom line is, cancer is extremely expensive to diagnose and treat. My wife was on a daily medication to inhibit estrogen from feeding the cancer cells; this came to $56,000 per year ($4737/per month, p.44). She had one chemotherapy regimen that was $48,000 for three months. We had treatments that totalled more than $100,000 alone; we include oncologists and physicians, diagnostic procedures, and lab work, and the total for the year came to $197,725. (p.44). It was like this for THE LAST FOUR YEARS. I found a way to cap the financial hemmorage: the “Out-of-Pocket Maximum Plan,” or stop loss plan (p.44).

THE NORMAL EVERYDAY-COUPLE NEEDS TO KNOW THIS!  If they face the cancer journey without this information, they will predictable lose their savings, and possibly their home.   Over 70% of all bankruptcies in America have a medical basis, and 80% of these bankruptcy victims had 80% – 20% insurance….and many go on to lose their homes as well (p.42).     In the above example,  if we had opted for 80% – 20% insurance, I would have had to pay 20% of $197,725.  or roughly $39,545. out of our own resources.   Suppose my wife had needed a stem cell transplant, or surgery to remove the large brain lesion around her brain stem;  add another $150,000.  Now we owe 20% of  $347,725. or $69,545 out of our own pocket!   The common middle class person just cannot sustain these costs.  But we are talking about your loved one, your life partner, your spouse.  Your impulse is to do “whatever it takes” to keep her alive.   Everyday middle class couples are facing these crises on a daily basis in America.

It is the common experience of cancer couples: You get diagnosed with a terrifying disease, and it crushes you financially as well—unless you are somehow well prepared and informed.

Bring on the Doctor Appointments

Taking a step back from the facts, facts, facts this week I am going to share with a few (what I hope will be) helpful tips for your patient or loved one’s scheduled doctors appointments.

dr-visitIt is never fun to go see doctor (unless your doctor also happens to moonlight as a stand-up-comedian.) But, when your loved one if afflicted with a progressive and degenerative disease, it quickly becomes a necessity to preserve continuity of treatment and ultimately, to prong life itself.

It is useful to combine your insurance cards with your State Driver’s License and to keep these both together in your wallet/purse. An ID lanyard that hangs around your neck allows you to openly wear the identifying documents, must like the ID document you may find pinned to your Physician’s shirt/hanging around his/her neck. Hospitals use these highly visible ID lanyards to easily identify the person wearing them and can easily validate their ability to come and go.

In filling out the usual Patient Admission Form for any new Physician, you will always be asked for a list of the medications your patient, or partner, is taking on a daily routine basis, or as needed on a specific schedule/occasional basis. It is a huge time saver to produce an updated Patient List of Medications and this document also helps any new Physician to make informed decisions should any new circumstances arise. This is  one of the most useful documents that you can produce; it will be used continuously.

I also learned to carry about 6 – 10 copies of the Patient List of Medications in my loved one’s medical folder. I was sure to update these copies every time there was a change in medication or dosing. I would advise you to do the same. 

To see an actual Patient Medical List, please visit Exhibit 1a and Exhibit 1b in Cancer Caregiver Roles: What You  Need to Know 

Normal procedure of an office appointment begins with check-in and then weigh-in, blood pressure and the oxygenation MD000111measurements. As a Caregiving Partner, it is useful to keep a a log of your loved one’s weight to serve as a marker for how well the patient’s nutritional needs are being met. I would also suggest keeping track of the blood pressure measurements, as an indicator of overall stress effects and well-being. These measurements are usually entered into the patient’s Medical Records — but they are not given to the patient or the Caregiving unless they have been requested. 

My last word of advice: it is good practice to request a patient copy of the results from any diagnostic imaging procedures and blood draws. These will be helpful for you (as a caregiver) to aid in understanding how the patient is progressing, and it will be useful if your patient has to go see a different specialist or Oncologist. [See Exhibit 2a and 2b in Cancer Caregiver Roles: What You Need to Know] 

Any helpful tips or suggestions you would like to add to this list?

Clinical Trials and the Risks

Clinical Trials are research studies in which people help oncologists or researchers improve the care of cancer patients. These studies try to answer scientific questions or try to find better ways to prevent, diagnose and treat the disease. Clinical trials try to determine whether a specific drug or treatment regimen is safe and effective for the treatment of a specific condition.

medical_report

Clinical Trials go through different phases: 

  • Phase 1: Researchers try to evaluate the safety of a new medicine or treatment, the best dose or schedule  to be used in the treatment. This phase is also used to determine the potential side effects may occur. 
  • Phase 2: The medicine or treatment is tested on a larger group with the disease in question, and researchers try to ascertain how well the medicine or treatment works with respect to a particular medical condition.
  • Phase 3: Tested on an even larger group, now the medicine or treatment is studied to find out how well it works compared to standard treatments or placebo. During this phase, patients are given the study medicine or treatment, the standard treatment, and a placebo on a randomized basis. Most medicines that reach Phase 3 trials are considered for FDA (Food and Drug Administration) approval.
  • Phase 4: Tests are now conducted to find new uses for the medicine, or new ways of administering it, or any additional safety information. For example, it may be studied on a specific population cohort or demographic like how well it works on adults over 65, or a specific racial group.

Risks: 

  • The new treatment may not work as well as standard treatments 
  • Your loved one  (or patient) may experience serious or even life-threatening side effects
  • The trial may take up more time than standard treatments

 

Most insurance carriers will not pay for your loved one to participate in a Clinical Trial; however, normally all the costs of treatment are covered by the organization sponsoring the Trial.

If you have an interest in pursuing this for your loved one, begin by consulting your Medical Oncologist. 

Also you may wish to visit Clinical Trials.gov  which is a web site developed by the National Library of Medicine of the U.S. National Institutes of Health to provide information about clinical research to the public.

Feel to get in touch with any comments/questions that you may have about Clinical Trials! If you or a loved one has participated in a Clinical Trial, I’d love to hear your experiences. 

 

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