While a living will or other documents may be in place, the following forms will enable you to provide emergency and/or medical personnel with a more concise and clear understanding of the TiLOs wishes should he/she be unable to communicate.  Please make sure that the stated wishes of the TiLO are consistent with the content of the living will, should such a document exist.  This will help to minimize any confusion should an emergency situation arise and the TiLO is unable to communicate.

In addition, as part of this process, it will also be very important to appoint a trusted individual to act on behalf of the TiLO with respect to health care related matters should the TiLO be unable to communicate.  I have included a link to the California Advance Health Care Directive to be used for the purpose of appointing this individual.  This person will be authorized to act on the TiLO’s behalf in making medical decisions that may not be covered in the DNR, POLST or even the living will, again, if such a document is in place.

For instance, while caring for my terminally ill father, his condition suddenly changed for the worse and he lost all of his ability to speak.  Fortunately, we had executed all of the aforementioned documents within a month of his terminal prognosis, and I was able to communicate my dying father’s wishes with the medical care team and hospice during his final seven days.  Once he passed, I made a phone call to the funeral home and they came to pick up his remains.  By having all of the above essential items in place earlier on in the process, we could really focus on living and making the most of each day, maximizing his quality of life.  Having the above items in place also enabled me to take my father on a 10-day 3,200-mile roundtrip back to his hometown.

Key EOL Documents

As for documents that should be put in place, if such documents are not already in place as part of any end-of-life (EOL) planning that may have taken place prior to the terminal prognosis being issued, please consult with legal counsel as the requirements may be different in each state or, if applicable, country. in addition to the documents (i.e. Medical DNR, Medical Power of Attorney, etc.),

Prehospital DNR Form

The Prehospital Do Not Resuscitate (DNR) Form is an official State document developed by the California EMS Authority, in concert with the California Medical Association and emergency medical services (EMS) providers, for the purpose of instructing EMS personnel regarding a patient’s decision to forgo resuscitative measures in the event of cardioplumonary arrest…a heart attack.

Resusciative measures to be withheld include chest compressions (CPR), assisted ventilation (breathing), endotracheal intubation, defibrillation, and cardiotonic drugs (drugs which stimulate the heart).  The form does not affect the provision of life sustaining measure such as artificial nutrition or hydration or the provisions of other emergency medical care, including treatment for pain, difficulty breathing, major bleeding, or other medical conditions.

The DNR must be signed by the patient or by the patient’s legally recognized health care decisionmaker if the patient is unable to make or communicate informed health care decisions.  The patient’s physician must also sign the form, affirming that the patient/legally recognized health care decisionmaker has given informed consent to the DNR instruction. The DNR form should be clearly posted or maintained near the patient at all times, whether at home, in the hospital, a nursing care facility, a hospice facility, or even while traveling away from any of these places.

DNR Form: CA DNR Form

Physician’s Order for Life Sustaining Treatment (POLST)

The Physician’s Order for Life Sustaining Treatment (POLST) form is approved by the Emergency Medical Services Authority (EMSA) and the Commission on EMS, and developed by the Coalition for Compassionate Care of California.  The POLST form is a medical order that gives seriously ill patients more control over their care by specifying the type of medical treatment a patient wishes to receive at the end of life.  The EMSA approved POLST form must be signed and dated by a physician, or a nurse practitioner or a physician assistant acting under the supervision of the physician, and the patient or legally recognized health care decisionmaker.  The POLST form should be clearly posted or maintained near the patient at all times, just like the executed DNR form.

Physician Orders for Life-Sustaining Treatment (POLST): POLST_2017_Final

Advance Health Care Directive (a.k.a. Durable Medical Power of Attorney)

“Advance directives are important tools for anyone to have, because even the healthiest person could experience a sudden accident and not be able to speak for herself. But when you have a life-threatening illness, it’s particularly critical to make clear, in writing, what your wishes are should the time come when you can’t express them yourself,” per WebMD.

Advance Health Care Directive Form: California Advance Health Care Directive

Should you wish to see some additional helpful information with respect to these critical EOL forms, please see the following WebMD link: https://www.webmd.com/palliative-care/advance-directives-medical-power-attorney

As a final note, once again, the sooner that the pre-planning for the funeral and burial arrangements are completed all the better.  The same can be said for the EOL related documents that I have covered in this latest blog post.

Remember, “I am not giving up, we just need to prepare for every possible outcome.”

As always, great big hugs to one and all!!! ❤ ❤ ❤

~D. Toru White~

As you read this particular blog post, please keep this very important point in mind: 

~I am not giving up, we just need to prepare for every possible outcome.~

Now, before reading on please take a deep breath and try to clear your mind of all other issues or concerns for a moment.  Without meaning to be overly dramatic, note that these particular steps can be very distressing in light of the nature of this subject matter with bringing TiLOs, caregivers and loved ones face-to-face with the realities of the possibility of death and dying within a relatively short period of time of six months or less.  However, once these very important steps are completed, in the absence of making any changes, this phase of the EOL (end-of-life) planning will be in place.

Please note that I cannot emphasize enough just how important these challenging, yet, essential steps are once a terminal prognosis has been received.  All that I share, as with my other blog posts, is based upon my experiences with my five departed TiLOs.

As shared above, please keep in mind, “I am not giving up, we just need to prepare for every possible outcome.”

Once you get the caregiving team in place (see my second post, Take My Hand…), it would be a good idea to get the pre-planning in place for the funeral and burial arrangements, as well as the end-of-life care plan.  The sooner that this process is completed the better so that the TiLO may still be able to clearly communicate his/her wishes with respect to these extremely important issues.

Please note that each individual TiLO is different and their wishes as to their end of life care should be documented using the standard forms used in his/her respective state or country.  I have included links in Part 2 of this blog post (Post Terminal Prognosis: Topic No. 5 (Part 2 of 2) – Pre-Planning for Funeral/Burial and EOL Care) to PDF versions of these three documents which are used in the State of California.

Most importantly, once these forms have been completed with the assistance of the TiLO’s primary care physician (PCP) or authorized personnel under supervision of that PCP, it is imperative that these three forms be readily available and with the TiLO at all times in the event that emergency and/or medical personnel may need to render health care related services. This is where my recommendation in earlier posts about the importance of being organized will come into play, as well as being prepared at all times.

Pre-Planning Funeral and Burial Arrangements

If your TiLO does not wish to participate but has provided feedback as to their wishes, you may wish to take another loved one or friend along to meet with the funeral home representatives.  You may also wish to meet with several in order to determine which firm you and your TiLO will be most comfortable with handling the final arrangements.

While this can be a very difficult task to work on and complete, I would strongly recommend that the final arrangements be put in place so you, the caregiver, won’t have to think about it again until your loved one passes.  At that time, you will appreciate having completed the arrangements with the funeral home in advance as you will only need to make a phone call in order to have the remains transferred to the funeral home once hospice confirms the passing of your loved one, assuming the death occurs at home.

In the event that hospice is not involved with the care of your loved one at the time of death and, again, assuming he/she passes at home, a coroner may have to be contacted prior to removal of the remains.  Your medical care team can provide assistance as to the necessary steps to take under these circumstances.

Please know that it may take two to three meetings to get all of the arrangements in place depending upon a variety of factors such as type of burial (i.e. in ground, above ground, cremation, location, etc.); casket or urn selection; military accommodations, if applicable; graveside and/or church service; grave marker options; viewing; after service gathering; financial considerations; etc.  When you meet with the funeral home, you should be prepared to complete some preliminary forms (general information about your TiLO), as well as start to address some of the above list of items based upon the wishes of your TiLO.

In all of my experiences except one, I was able to make all of the arrangements in advance which enabled me to focus on tending to the details of floral arrangements, coordinating the scheduling with the respective churches, writing the obituaries, collecting memorial pictures, planning for the after service gathering, etc.  Note that, in my father’s case, he wanted me to write his obituary in advance when I was putting all of the major plans in place with the funeral home, as he wanted to review it beforehand.  Unlike with my other TiLOs, this was a very unusual request, however, it actually helped my father come to terms with his impending demise.

Again, each TiLO is different.  The objective is to try to carry out their wishes to best of our ability.

Great big hugs to one and all!!! ❤ ❤ ❤

~D. Toru White~

Based upon the nature of a terminal prognosis, generally speaking, the patient will more than likely die in six months or less regardless if they receive any form of treatment or not.

This is a very important factor to consider when addressing the issue of conventional vs. alternative medicine options, quantity vs. quality of life, etc.  Regardless as to which treatment options, if any, are chosen, it is important to keep in mind that there will be consequences to any decision.  As to whether the final decision(s) are right or wrong may very well be determined with the passage of time relative to the initial expectation that was the basis for making the decision, as well as the outcome.

For those who claim that money corrupts conventional medicine which is representative of “big pharma,” it is also important to remember that the “alternative” medicine arena generates over $34 billion a year which would also make it big business and susceptible to being influenced by money, as well.

Conventional Medicine vs. Alternative Medicine

For all intents and purposes, conventional medicine is considered to be “science based” medicine that is supported by evidentiary data that it works.  The efficacy or effectiveness of conventional medicines is documented with such information being used by doctors when determining potential treatment options, if any, for terminally ill patients.

On the other hand, alternative medicine which includes a wide range of approaches, involves “alternative” treatment approaches that has limited or no information available as to the effectiveness in eradicating the underlying disease of a terminally ill patient.

While the anecdotal evidence seems to be endless when it comes to the sharing of information as to the effectiveness of alternative medicines such as cannabinoid-based products or the Gerson Therapy just to name a few, it is very important to remember that this is based upon informal personal testimony or stories.

In the simplest terms per Timothy Caulfield, a professor at the Health Law Institute at the University of Alberta, “all that matters…is what has been shown to be effective—whether that’s a pharmaceutical or something else entirely.  We have science-based medicine – stuff that works – and stuff that doesn’t…that’s the real distinction.”

He goes on to point out that should an alternative treatment prove to be effective based upon documented evidence, it will be reclassified as conventional medicine.

Although it has been nearly six years since the passing of my TiLO, I continue to follow developments within a wide range of medical treatments, conventional as well as alternative.  My motivation is quite personal in light of the high risk potential that my adult children and I have in someday having to possibly face some of the illnesses which claimed the lives of our loved ones.

In looking back at the very difficult chemo regimen that my TiLO, Melanie, had undergone prior to us switching her care over to a National Health Institute Comprehensive Cancer Care Center, unfortunately, I believe that money and ego may have played a role in the options that we were presented with at the time of her initial diagnosis, which was TNBC Stage IIIB.  I would come to learn 15 months later just one week before Mel passed that the medical oncologist who came highly recommended, had no prior experience in dealing with TNBC nor IBC let alone the even rarer combination of both at the same time.

I cannot begin to tell you how devastating it was for me to hear this from one of the partners in the medical oncology group, who was the specialist for my late wife’s extremely aggressive form of breast cancers.  He only learned of Mel’s medical condition at the time that he was coincidentally assigned to manage her care when she was admitted to ICU, again, 15 months after her initial diagnosis.

I share this information to underscore the importance of recognizing that while many within the conventional and alternative medicine arena may be well intentioned, practitioners within both fields may be just as motivated by money, ego, etc.  They, like all of us, are only human.

TiLOs, caregivers and loved ones who are actively engaged as a part of the caregiving effort, please work together to gather as much information as possible with respect to available treatment options.  Caregivers and loved ones, you do the heavy lifting in terms of doing most of the research.  Communicate, communicate, communicate.

Remember that with every decision there are consequences, good as well as bad.

Do doctors make mistakes?  Absolutely.  Does money corrupt?  Absolutely…within the conventional as well as the alternative medicine arenas.

Get a second or third opinion, if necessary.  However, please be prudent with your time for if the terminal prognosis is fairly sound, the underlying illness may be advancing.

Just as important, keep focused on trying to make the most of each day, one day at a time.

For TiLOs, caregivers and loved ones actively engaged in the caregiving efforts, please know that this is one of the most important crossroads that you will face following a terminal prognosis.  Work together.  Keep your hope and faith.  Believe.

Before you leap, sort of speak, be sure you understand the side effects of any form of treatment (conventional or alternative), consider the effectiveness compared to the severity of potential side effects, and be very clear as to any limitations as to follow up treatments to deal with any side effects or conflicts with other ongoing treatments.

Unlike other medical diagnosis or prognosis, in this instance, the one that you have received is believed to be terminal.  I believe that each end of life journey is unique.  As I have shared in prior blog posts, should you outlive the terminal prognosis…outstanding!!!

Hugs to one and all!!!

~D. Toru White~ 

‘Living while dying’ is a term or phrase that I have always used while caring for TiLOs (an acronym that I use to affectionately refer to “terminally-ill loved ones”) as a reminder to help them make the most of each day, one day at a time.

As I have noted in a previous blog, the final life journey for each person may be very different compared to others depending upon a variety of factors, choices and needs.  There is no “one size fits all” approach when it comes to caring for a TiLO.

For example, my father had been planning a trip back to his hometown prior to his terminal prognosis involving a rare, aggressive form of gastrointestinal cancer.  So, right from the start, I began making preparations to get him back home again even though he had already started chemotherapy treatments.  Although his condition was changing so rapidly, we were still able to make the trip instead of waiting for a better time.  Had we waited, he would have never made it back to see his relatives.

On the other hand, when my loved ones were more homebound or bedridden due to their physical condition, I took very different approaches to create alternative ways to help them make the most of each day, one day at a time, while at the same time making sure that they were as comfortable as possible.

A terminal prognosis does not mean that a person needs to just sit and wait to die.  Nor does it mean, no matter how well intentioned by hospice organizations and/or medical professionals, that we should hasten the death process.  Trust me when I say that, unbelievably, I had a situation arise with a hospice organization who had encouraged taking proactive steps to do just that, despite my TiLO explicitly stating that she wanted to live as long as possible.  In short, I fired the hospice team, which I will cover in a future blog post.

As we saw with my mother, who was given 3 months to live at best, she lived for 8 months. As a matter of fact, she was very much engaged in daily activity and interactions during most of that time, of course, with some exception as her physical condition changed.

One morning, within the first 60 days in our home, she had a mini-stroke (“TIA”) while we were all gathered around the breakfast table.  Yet, after a brief hospital stay, she was back home and, within a relatively short period of time, her condition had greatly improved and she was able to enjoy the same level of activity as she did prior to the stroke.  In lieu of bringing her back home, we could have chosen to have her cared for at a medical rehabilitation center.  However, we believed that the best place for mom was in our home even though we had no idea if she would recover.  Note that mom also wished to be at our home instead of a rehab facility.

While others may have chosen a very different course of action, one of the realities that we must contend with are the limitations within hospitals in caring for TiLOs.  In three out of five situations involving my loved ones, we were confronted with the harsh reality of policies that strictly limited the length of stay of each of my loved ones once it was determined that my loved one no longer had a “treatable condition.”  This included my mother, who was unexpectedly discharged on Day 7 of her initial hospital stay after suffering congestive heart failure despite the fact that the hospital medical team could not get her vitals stabilized.  With the proactive assistance of mom’s Palliative Care team via daily e-mails, we were able to get mom stable within three weeks of coming into our home.

Remember, until their final breath, our loved ones are literally still alive even when they are in the active stages of dying.  Help them to make the most of each day, one day at a time.  Focus on helping to maximize their comfort, desires and needs.  Should they outlive the original terminal prognosis, outstanding!  May their quality of life meet their desired expectation.

Hugs to one and all!!! ❤ ❤ ❤

~D. Toru White~

Quality of Life refers to focusing on the palliative care aspects of a TiLOs daily life with any treatments limited to minimizing symptoms and discomforts including among other things pain management to maximize comfort.

Quantity of life is essentially focusing on the extension of survivability of a TiLO by administering treatments in an effort to cure the underlying medical condition that warranted the terminal prognosis.

Remember, a terminal illness, in medical terminology, is defined as a disease that will more than likely result in the death of a patient within a period of six months or less, regardless of whether they have any form of treatments.

Therefore, based upon the nature of a terminal illness, one of the first issues to address involves a conversation with the medical care team as to whether the focus will be on quality or quantity of life.  What are the options, if any, that need to be considered?

A question that generally arises is, if a person chooses to focus on quality of life, is that considered to be giving up?

In my honest opinion, no, I do not believe that choosing quality of life is giving up.  My loved ones and I have always viewed the decision as to whether to start, continue or stop treatments to be a very personal one.

As part of the decision as to whether to start or continue treatments, a person must consider the side effects of such treatments and weigh that against the potential upside of the treatment extending life for any period of time.  Then, they may wish to factor in other considerations that they believe need to be considered including their quality of life.

Quantity of Life

Jimmy, my younger brother, chose to take another round of chemo even though his primary doctor, who was also a very close personal friend, warned him that there was a strong possibility that doing so could shorten his life.  As Jimmy shared with me, although he was afraid that he might die sooner, he also was mindful of the fact that he was dying and just maybe the additional chemo treatment might help him to rebound just one more time as it had done so a couple of months earlier.

Within less than 12 hours of receiving the chemo treatment, Jimmy’s condition quickly deteriorated.  He passed two days later with me by his side in the hospital.

Quality of Life

Melanie, my wife, had been battling two of the rarest, most aggressive combinations of breast cancer for over a year with chemo, a double mastectomy, a craniotomy (brain surgery to remove a tumor mass), two different types of radiation treatments, metal talons screwed into her skull, meds, plus all of the side effects that went along with each of those treatment regimens not to mention all of the lab tests, scans, hospitalizations, doctor’s appointments, etc.

Finally, just over a year after the initial diagnosis, there were clear signs that the most recent combination of treatments was paying off as most of the active cancers were being eliminated.  All we needed was one more set of clear scans showing no new signs of cancer or growth of existing tumors, which had been the case with the most recent sets of scans.  Well, that was not to be, as Melanie developed new symptoms which were caused by another very aggressive, fatal form of brain cancer called leptomeningeal carcinomatosis, wherein the cancer cells get into the spinal fluid and the lining of the brain.

After meeting with our Medical Oncologist at the City of Hope, who gave us a revised terminal prognosis from the one that she had given us six months earlier in January 2012 plus, she also shared information about the limited treatment options, side effects and survivability info, Mel and I left knowing that a decision had to be made fairly quickly as to what was the next step.  Treatment or no treatment?  Quantity of Life vs. Quality of Life?

Mind you, we have two children including our youngest who was a senior in high school at the time.  Over the next several days, I scoured the Internet searching for other possible solutions, researched the existing treatment options, gathered additional information on this latest disease and even shared in online conversations with medical professionals as well as others whose loved ones had been diagnosed with some form of leptomeningeal disease.

After a lot of conversations, four short days later, Mel and I headed back to COH.

Although Melanie’s physical condition was weakened during most of the previous six months which required the use of a wheelchair, when we went back for her follow up appointment, she opted to walk up to the doctor’s office on the 3rd floor.  When the M.O. came in along with her colleagues, Melanie calmly and collectively informed them that she was not going to try the treatment option which involved inserting a medical device into her skull.

Quality of Life was going to be our focus.

While the doctor and the rest of us in the room were trying to keep from crying, Melanie, a children’s music educator, decided it was a great time to share a new song that she had been working on.

While I have no way of knowing what would have been had she opted to try the one available medically invasive treatment option, I do know that we have plenty of pictures and home videos, videos of Melanie performing songs on Youtube.com/MWPinknotes and a lot of great memories to share including the celebration of her 49th birthday; spending time with our kids enjoying the 4th of July celebration; and watching the Closing ceremony of the 2012 Summer Olympics, which she enjoyed very much.  Do I miss her very much even after nearly six years?  Absolutely.  Do I regret the decision made?  Absolutely not.  Did we give up?  No, we merely decided to go a different direction and enjoy each day to the fullest, one day at a time.

Perspective

Both of my loved ones were at the same critical point as to whether to continue or stop curative type treatments.  However, they made two very different decisions.  To this day, I respect and support both.

As with any decision in life, there are always consequences.

One note of caution.  I have known of situations where terminally-ill patients and their family will travel great distances to seek more treatment options, only to find that there are still doctors who will refuse to administer any form of curative type treatment if they believe that it will do more harm to the patient than good.  Just because we want something does not guarantee that we will either get what we are seeking, or, just as important, we may not get the results that we are hoping for if the treatments options for which we are seeking is administered.

It is very important to maintain a healthy perspective as to the merits of the circumstances and options that may be available when making decisions with respect to quality vs. quantity of life.  While Mel and I decided to shift our focus to quality of life, I continued to vigorously research for any other options to be considered during her final two months of life.  Note that these efforts were at night or during periods when she was resting so it would not take away from helping Mel get the most of each day.  We still embraced hope each and every day that just maybe today would be the day when someone would come up with a treatment to at least slow the advancement of the leptomeningeal carcinomatosis.

While there are always those stories of a “miracle” cure or complete recoveries, it is very important to keep in mind that each of us are different, therefore, there is no guarantee that the efficacy of any treatment will produce the same results.  Again, it is a decision that must be carefully weighed when it comes to quality vs. quantity of life issues.

Hugs to one and all!!! ❤ ❤ ❤

~D. Toru White~

The Fourth District Court of Appeals in Riverside issued an immediate stay as of Friday, June 15th, which essentially puts California’s right-to-die-law for terminally ill patients back into effect.

Just three short weeks ago, a Riverside County Superior Court judge had declared the law unconstitutional based upon the manner which the legislation was passed in a special session in 2015.  The judge did not address the issue as to whether people should be allowed to end their lives.

While the opponents of the latest decision by the CA Appeals Court has until July 2nd to file objections, for the present time, terminally ill Californians with six months or less to live once again have the right to end their respective lives should they choose this option, of course, subject to adhering to the parameters of this law.

As I shared in my previous post on this controversial matter, other states that have Death with Dignity statutes in place include Colorado, Oregon, Vermont and Washington.

In Montana, there is the Rights of the Terminally Ill Act which allows a terminally ill patient, at least 18 years of age and deemed to be mentally competent, to self-administer doctor prescribed medication. Unlike the other states, where death with dignity statutes were passed through voter referendum or through legislation, in Montana, the right for a terminally-ill patient to use prescribed life-ending medications was through a court case in 2009.

The State of Hawaii passed a Death with Dignity statute in 2018 and will go into effect on January 1, 2019. The District of Columbia also has a statute in place as well.

While I certainly respect the views of those who oppose Death with Dignity statutes or acts, sometimes referred to as “assisted suicide” or “right to die” initiatives, based upon my personal experiences as a caregiver for five terminally ill loved ones over a 20-year period, if such options were available in California during their respective final life journeys, we would have at least discussed this as a possible option. Objectively speaking and from a position of compassion, I witnessed the occurrence of medical conditions that resulted in pain that was well beyond our ability to ensure daily quality of life with any pain medications.

As I have also previously stated, I can certainly appreciate and respect the position of those with concerns about possible abuses of such options for terminally-ill patients.

Hugs to one and all!!! ❤ ❤ ❤

The following is a link to the latest status of the California statute:

https://www.cbsnews.com/news/california-right-to-die-law-end-of-life-option-back-into-effect-2018-06-16/

~D. Toru White~

The End of Life Options Act, California’s right-to-die-law for terminally-ill patients was suspended as of Friday, May 25, 2018. The issue at hand appears to center upon the manner in which this legislation was passed in a special session in 2015, rather, than, the legal considerations as to the act itself.

For terminally-ill patients as well as their loved ones in the State of California, this may be a very important development especially if there is any thought as to choosing this option, at least for the present time.

Other states that have Death with Dignity statutes in place include Colorado, Oregon, Vermont and Washington.

In Montana, there is the Rights of the Terminally Ill Act which allows a terminally ill patient, at least 18 years of age and deemed to be mentally competent, to self-administer doctor prescribed medication. Unlike the other states, where death with dignity statutes were passed through voter referendum or through legislation, in Montana, the right for a terminally-ill patient to use prescribed life-ending medications was through a court case in 2009.

The State of Hawaii passed a Death with Dignity statute in 2018 and will go into effect on January 1, 2019. The District of Columbia also has a statute in place as well.

While I certainly respect those who hold views opposing Death with Dignity statutes or acts, sometimes referred to as “assisted suicide” or “right to die” initiatives, based upon my personal experiences as a caregiver for five loved ones over a 20 year period, if such options were available in California during their respective final life journeys, we would have at least discussed this as an possible option. Objectively speaking and from a position of compassion, I witnessed the occurrence of medical conditions that resulted in pain that was well beyond our ability to ensure daily quality of life with any pain medications.

At the same time, I can certainly appreciate the position of those with concerns about possible abuses of such options for terminally-ill patients.

Hugs to one and all!!! 

The following is a link to the latest status of the California statute:

https://www.sfchronicle.com/…/California-s-assisted-death-l…

In the Beginning…

Before we get started, here are some key points that I learned with each loved one. Please note that this listing is not meant to be all-inclusive but, rather, to provide some basic guidelines upon which to start to form a caregiving foundation. Additional details on the following points and much more will be included in future posts.

  • This is about living. “I may have a terminal prognosis but, I am still here.”

As Melanie and I used to say, “each day is another opportunity for someone to find a potential treatment regimen that could possibly slow the progression of the cancer.” Therefore, to the fullest extent possible, we got out each and every day even if we had to use her wheelchair.  We took road trips, traveled to our daughter’s club volleyball matches, went for walks even in the rain, had meals at some of our favorite places or parks, recorded new songs the Mel had written including videos to post on Youtube.com, etc.

With my father, soon after his initial diagnosis, we put plans in motion for a road trip to visit family in Louisiana. Just after his third chemo session three months into his final journey, he and I made the 3,100 mile, 10-day round trip. Although there were some medical challenges which required ample preparation and prior approval from his medical care team, we were able to make his final trip home. Note that we had already put plans in motion for a second trip as we made plans for the first one.

  • Life is a gift. Embrace each day to the fullest–good or bad, making the most of the time that you share, regardless of the prognosis and the time that you may have.
  • Take each day one day at a time.
  • Be present and proactive as a loving spouse, partner, parent, friend, caregiver and/or patient advocate.
  • Assemble a care team consisting of willing and able family and friends. Aside from your medical team, it will be important to put together a support team.

Note, do not be surprised if people say that they want to be a part of the support team, but don’t show up when called upon or when things get tough.  This is not uncommon.

Again, remember, time is not on your TiLO’s side so keep moving forward with respect to his/her care, even if you are the sole primary caregiver.

I was the primary caregiver for each of my TiLOs even though, in each situation, I started with an open invitation to all family and friends who wanted to be a part of the care team. While I cared for Mel and mom in our home, I cared for my other TiLOs in their respective homes.

More often than not, during the time that I spent providing online support, one of the most common issues was the lack of supporters to be a part of the care team.

  • Create a ‘timeout’ space and/or activity for you and your loved one.

For example, Melanie and I used to go to the Rose Garden at the City of Hope (“COH”) facility in Duarte after her appointments.  On other occasions following some really tough appointments and/or news, we would spend time in the Japanese Garden at COH.  And, from time to time, we would splurge and get shakes (chocolate and strawberry) from the Carl’s Jr. situated just up the road from COH, then, we would take surface streets home (we referred to this as the ‘slow road’ vs. taking the freeway).

  • In situations involving very aggressive diseases such as certain forms of cancer with a Stage IV diagnosis, seek primary care medical attention and/or a second opinion at a Comprehensive Cancer Center (“CCC”), as designated by the National Cancer Institute. Some of the notable CCC medical centers in the US include the City of Hope (CA), MD Anderson (Texas), Dana-Farber (MA) and Sloan Kettering (New York).

Please note that by no means is this suggestion meant to be disrespectful towards any other hospital or medical institution. We learned firsthand the importance of seeking a second opinion after Melanie had endured some very harsh chemo treatments at a highly recommended local medical oncology group. While the initial medial oncology team totally missed diagnosing a second extremely aggressive form of cancer that Melanie had as they had mistakenly identified it as “new tissue,” the COH team immediately recognized the presence of the second form of cancer and, soon thereafter, found and surgically removed a tumor mass in the occipital region of her brain. This critical discovery extended her life by eight months, most of which was filled with quality time.

The bottom line is that not all doctors, hospitals, hospices, etc. are created equal.

While caring for my father, we also sought a second opinion from Kaiser Hospital after he underwent a terribly botched medical procedure at a VA (Veterans Affair) hospital in Southern California.

A note of caution. Please keep in mind that a second opinion may actually corroborate the initial diagnosis and prognosis. In such instances, while you may decide to seek additional opinions, please keep in mind of the importance of the potential loss of quality time and days in pursuit of a “better” opinion.  Once the diagnosis is set, if available, the medical team can then outline an action plan for treatment and/or palliative purposes depending upon the status of the medical condition.

In my uncle’s case, after he received a terminal diagnosis for colon cancer a couple of months following surgery, he sought a second opinion at COH, who, during their initial screening process, confirmed the terminal prognosis issued by his medical oncology team.

In another instance where I was providing online support for a gentleman caring for his terminally-ill wife, who had developed a very aggressive form of metastatic brain cancer, he sought a second, third and fourth opinion from three top comprehensive cancer centers over a 12 months period. In each instance, he and his wife traveled to each medical facility where she was admitted. In each instance, although they had the financial wherewithal to pay for admission and stay in the hopes that her condition would improve so that a very difficult medical procedure could be undertaken, she spent her final year at four hospitals across the US. The desired medical treatment involving methotrexate being administered directly into her brain was never performed due to her constant weakened health condition. To say the least, during my conversations with her husband after she passed, he expressed a great deal of remorse as to the way that his wife spent her final year of life.

  • Remember, with every decision there are resulting consequences…good as well as bad. Ask questions, research and discuss as thoroughly as possible in terms of a TiLO’s wishes and expectations.
  • Time is not on your side.  Remain proactive and diligent with respect to treatments, whether they be curative (trying to cure underlying medical condition) or palliative (comfort), communicating with the medical care team, while maximizing the quality of life as the disease progresses.
  • Keep a daily journal. Make notes of appointments, medical care team members and their respective roles plus contact information, meds, tracking vitals and daily activities to be monitored per doctor request (i.e. food/fluid intake, bowel movements, urine output, sleep, mobility, cognitive abilities, etc.). Each day can be very fluid so a journal can help maintain vital information.
  • Stay focused.  For a TiLO’s caregiver, the focus should be on slowing the progression of the disease if possible through available treatment options, alleviating symptoms to maximize daily quality of life and finding ways to keep your TiLO engaged in day-to-day life (i.e. hobbies, music, TV, movies, outings, conversations, etc.).  Remember, one day at a time, one step at a time.
  • Caregivers do all of the ‘heavy lifting’ as your TiLO’s primary focus should be on getting stronger, getting through the treatments, if any, and getting through each day one day at a time.  Quality of life should be your primary objective for your loved one each and every day.

At some point, the treatments may only be for quality of life purposes only, rather, than, for curative purposes. At this stage, the primary medical care team will refer the TiLO to hospice.

Hospice’s primary role is to put a plan in place to help maximize a TiLO’s daily quality of life once curative treatments have stopped, as well as provide the tools for the caregiver to accomplish the palliative objectives, and lend support to the caregiver and TiLO’s loved ones. In most cases, aside for the initial visit and intermittent daily visits in home settings, the hospice team is on-call should the TiLO or caregiver need assistance or have questions. Hospice teams can consist of a doctor, lead case nurse, social worker, person of faith, nurses, and other general support personnel.

Should a TiLO wish to pass at home, it is very important for the caregivers and ones to recognize that you will be the primary care provider. Unless paid for through insurance or private sources for 24/7 in-home care, the caregivers and loved ones will be responsible for keeping a TiLO comfortable as they go through the dying process.

  • Keep the faith.  However you and your loved one define your faith, which is a term that I use in the most general sense, it is very important to maintain that faith during this part of the life journey.

For me, personally, I have witnessed things with each of my loved ones that I am unable to explain however, I believe in my heart that the strength of my faith removes any questions for me regarding each of those occurrences.

For the caregiver, there will be a time to ponder a multitude of questions.  For now, do what it takes to help your loved one make the most of each day, one day at a time.

For those who argue that only God knows the timing of our passing, which I totally respect, please keep in mind that should the TiLO outlive the initial prognosis, all the better, especially if the TiLO’s quality of life meets their stated expectation and wishes.

In my experiences, three of my five TiLOs passed within the time range provided by their respective doctors. My mom was given a prognosis of three months at best, she was with us for eight months. When I asked her palliative care doctor how was it that mom lived five months beyond the best case estimate, he simply replied, “it was more than likely due to the loving care that we provided in a home environment.”

Note that we always created a “heaven on earth” setting for each loved one depending upon their lives prior to the onset of their illness.

For Mel, she had outlived the initial terminal prognosis with a miraculous recovery from the removal of a very large tumor mass that had formed in her brain. However, she then received a second terminal prognosis related to the metastasis (spread) of breast cancer cells to her brain. She passed within the estimated time range of 60 to 90 days.

In most instances where I was in communication with either caregivers or the actual terminally-ill person, the prognosis were fairly accurate.

Please note that this is not to say that doctors are infallible as I also know of some instances where individuals survived well beyond the original prognosis.

My point is, with this very delicate subject matter, spend most the time focused on living each day one day at a time. Only in time will we know as to the accuracy of the original prognosis. If a TiLO lives beyond the prognosis, outstanding, I say. May their days be filled with a quality life and embraced by all around them.

  • Remain respectful of the wishes and desires of TiLOs. Be their advocate, when necessary especially if they are unable to speak for themselves.
  • For caregivers, on days where everything seems to be going wrong and all seems bleak, remember that your TiLO carries the greatest challenges each and every day, as they may be another step closer to the end of their final life journey as we know it.  This is not to minimize all that you will experience, but to serve as a reminder for the sake of maintaining some semblance of perspective.  It will serve you well as well as those around you, especially young ones.
  • While dying is a natural part of our life cycle, dying well is just as important as living well.
  • For all who offer well wishes, thoughts and prayers, which is certainly appreciated, please keep in mind that an actual helping hand can help to maximize the quality of a TiLO’s life as their life journey comes to an end.

In each of my caregiving experiences, as well as those shared with me by many others online, there was never a lack of well wishes, prayers, kind thoughts and words of encouragement. However, the actual physical presence only materialized at the TiLO’s memorial or funeral service.

Please know that I share this final point in the hopes that we, as a collective society, will come to recognize the importance of helping each TiLO with dying well. Remember, time is of the essence and does not wait until people can get comfortable with the realities faced by TiLOs.

As always, hugs to one and all!!!

~D. Toru White~

Take My Hand…

Terminally-ill? Terminal prognosis? Advanced stages? What are you talking about? I just came in for a simple scan and now you tell me that I only have so much time left to live? It would be best to start getting my affairs in order. Really? You must have the wrong records, right? There must be a mistake. I am going to get another opinion! What do you doctors know anyway? Only God knows when my time is up! I know lots of people who have cancer and they have outlived the amount of time that their doctor had told them. So, what, are you now just going to give up on me? You are wrong and I am going to prove it when I walk back in here a year from now and show you just how wrong you are. I’m outta here!!!

Generally speaking, while we all recognize the realities that someday we will die, very seldom do we talk about, plan or even share our thoughts about death. Then, under varying circumstances when a terminal prognosis is given, we are suddenly forced to deal with the inevitable prospect of death within a stated relatively short period of time, whether we are the patient or a loved one. Regardless of where or how the news of the terminal prognosis is received, the shock and overwhelming flood of thoughts and emotions always seems to hit with a similar blunt force, at least, for me, based upon each of my personal experiences.

Like most people, initially, we want to get another opinion, start treatment options immediately, scour the web for others diagnosed with the same disease especially if they have also received a terminal prognosis, or, seek out anyone who will willingly give us feedback that we want to hear if for no other reason than to give us a reprieve from the shocking news.

Terminal illness, in medical terminology, is defined as a disease that will more than likely result in the death of a patient within a period of six months or less, regardless of whether they have any form of treatments. In certain instances, the estimated period of time may be stated to be as long as twelve months or less. Irrespective of the timing element, or, whether a person chooses to start or continue treatments, or, even the nature of the underlying disease, a terminal prognosis essentially refers to the predicted future course of the disease. This is an estimated time of survivability before the disease progresses to the point of death.

In plain truth, the disease is determined to be incurable and a person’s medical condition will more than likely progressively get worse over the days, weeks or months following the determination of the terminal diagnosis.

As is the nature of a terminal prognosis, I have always said, “time is not on our side.” For loved ones–whether they are family and/or friends–who decide to become caregivers, the ensuing journey will require a lot of unconditional love, patience, trust, perseverance, compassion, courage, empathy, understanding, sense of humor, strength, faith, hope, reality checks, communication, restraint, planning and organization, resourcefulness and preparation among other things. And, most importantly, a proactive approach in order to achieve what I believe to be the ultimate goal of caring for a terminally-ill loved one (affectionately referred to herein as a “TiLO”)—do everything humanly possible to make our loved one as comfortable as possible as they take, what I respectfully and sincerely refer to as, their “final life journey.”

In the event that you are the patient who is reading this blog post, my heart goes out to you and I pray that you are surrounded by loving support and comforted each day, one day at a time.

I am hopeful that the experiences shared herein will provide some greater awareness to all who wish to walk with a TiLO, helping them to make the most of their remaining days, whether measured in days, weeks, months or longer. To the fullest extent possible, focus on living, one day at a time. TiLOs, please let those around you do what I refer to as the “heavy lifting” while you keep things as simple as possible as you have enough challenges to contend with.

All that I share within these blog posts are based upon my personal experiences as a caregiver blessed with the gift to walk with five of my loved ones during their respective final life journeys. Regardless of the underlying illness or the estimated amount of time given per the terminal prognosis, in each instance, to the best of our ability, as you will see, we focused on living as well as how to make the most of each day, one day at a time!

Please note that when it comes to a terminal illness, there is no “one size fits all” approach or solution. While each person’s experience may bear some similarities to the experiences of others, there are so many different factors that come into play and, as a result, each person’s experience will more than likely be different. In the journeys that I shared with my loved ones, to the best of my ability, I tried to use all that I had learned from prior experiences to help me to do an even better job with each subsequent loved one that I cared for.

Once again, a great big hug to all as you embrace what I truly believe is one of the greatest challenges in life.

Take my hand…Let’s do this!

~D. Toru White~

In June 1992, I received a phone call that would forever change my life.

My younger brother, Jimmy, called me to share that he had just been diagnosed with AIDS, which was unexpectedly discovered during the early stage of an elective surgery procedure that he was undergoing to resolve some minor issues with his sinus.  Only four months earlier, he had tested negative for HIV.  Without hesitation, I agreed to be his caregiver, a role for which I had no idea as to what was entailed, especially when it involved a terminally-ill loved one.  Over the course of the next five months, I learned firsthand what being a primary caregiver for a terminally-ill loved one was all about and so much more.

At the time, little did I know that this would be my first of five shared experiences with terminally-ill loved ones over the next 20 years.

In the years that followed, I would care for an uncle, my father, my mother and, finally, my college sweetheart and wife, Melanie.  The underlying diseases or ailments respectively included colon cancer; a rare, aggressive adenocarcinoma of unknown origin; congestive heart failure; and TNBC/IBC, a rare, extremely aggressive breast cancer combination which later would metastasize to Melanie’s brain in the form of leptomeningeal carcinomatosis, another extremely aggressive form of cancer that is fatal in most cases with or without treatment.

Almost as though the collective experiences were scripted, the challenges that I came face-to-face with escalated with each passing experience far beyond anything that I could have ever imagined as I cared for each respective loved one.  This caught me by surprise as I had originally thought that there was no greater medical challenge than dealing with AIDS at a time when very little was known about this disease which, unlike today where AIDS is more chronic in nature, was fatal in most cases.

If there is one commonality among all five experiences aside from the fact that each of my loved ones was terminal, it was in the fact that even after the terminal diagnosis and subsequent prognosis, they were very much alive.  As a result, my focus was on how to maximize their comfort as we navigated a wide range of challenges, issues and decisions in what would be their final months of this life journey as we know it.  Since there is no “one size fits all” when it comes to caring for a terminally-ill loved one, it became essential that I quickly find a way to also maximize the quality of their end-of-life experiences.

I was honored that each of them trusted me enough to “walk” with them on their respective final life journeys.

I can honestly say that I truly believe that there is no greater challenge in life than caring for a terminally-ill loved one.

I look forward to sharing additional insight that I gained over the years while, at the same time, providing a comfortable place for all who find themselves dealing with end-of-life related issues.

Gentle hugs to one and all!!!

~D. Toru White~