As we close our eyes for the evening, I have a favor to ask.
While we are all dealing with the novel coronavirus (COVID-19) in our own personal and/or collective ways, please know that some families are also contending with some extremely challenging medical situations.
While there are countless number of prayers and well wishes abound, far and wide, can you please include a message of hope in the coming days?
Please help keep the flame lit so that the ray of hope touches as many lives as possible, especially for those whose life journeys may be on a shorter timeline.
I share this message as a reminder that while it is essential to focus a lot of attention on the current pandemic involving COVID-19, please remember that there are many who are contending with life altering events even in the absence of the coronavirus.
As Melanie and I always used to say, with each new day, there is HOPE that someone may discover a new treatment regimen. I’d like to modify one of our daily matras to:
With each new day, let there be HOPE!!!
Comforting hugs to one and all!!!
Always and Forever ❤️❤️❤️
~D. Toru White~
Melanie, the love of my life for 30 years, would always encourage me to continue to embrace life to the fullest, one day at a time, after her life journey came to an end. She would also tell me to be sure to find that “special” someone to continue sharing my life journey with. During our daily outings which included five mile “walks” although she was confined to a wheelchair, she would often say, “when you find that someone special, don’t be surprised if you hear me say ‘boo!'”. Mel always had a very witty sense of humor even as we faced, what I personally believe to be, one of life’s greatest challenges.
Based upon all of my personal experiences with having cared for terminally-ill loved ones, I firmly believe that having open conversations is extremely important. Openly conversing is one form of actively communicating with a TiLO and should be a two-way form of communication.
We found it very beneficial to be able to share openly with one another as it relieved a great deal of stress; enabled us to talk about concerns, fears and anxieties; and, just as important, provided each of my loved ones the opportunity to still feel proactively engaged in life instead of sitting idle and waiting for their life to end. Even when their respective conditions changed and they were unable to converse, I would sit by their side and talk about the day, being sure to greet them as if they were awake and alert every time I entered the room.
Now, seven short years after Mel’s sweet, angelic voice fell silent to my ears, I still continue communicating with her as I make my way back from what I refer to as life’s journeys edge, a journey that I have made six times after having cared for my TiLOs.
I have learned over the years that finding a creative outlet to communicate with Mel as well as my other loved ones has proven to be a very effective salve for healing my heart and soul.
I hope that the following will prove to be helpful in assisting and encouraging those who are dealing with a terminal illness, caring for or having cared for a TiLO to find a voice.
The journey continues…
As always, great big hugs to one and all!!!
~D. Toru White~
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A Life Rededication
By D. Toru White
Dare to dream,
Dare to embrace new things,
Dare to move forward,
Dare to step into each new day,
Dare to overcome,
Dare to realize new adventures,
Dare to love unconditionally,
Dare to engage with others,
Dare to challenge my fears,
Dare to share,
Dare to reach for the stars,
Dare to achieve,
Dare to be me.
Mel, as you can see, seven years later I am still learning as I make my way back from life’s journeys edge.
Even in your absence, i am inspired by all that we shared as I am reminded of the most basic tenet that you and I devised over the years of our shared journey…”Life is a gift, do something!”
Great big Heavenly loving hugs to you, Melanie Ann White! ❤️❤️❤️ Always and Forever ❤️❤️❤️
“No one can stop a ticking clock. But the great ones…the great ones always find a way to slow it down.”
Kevin Costner’s character, Sonny Weaver, Jr., makes this very insightful statement as the challenges of the day continued to pile up in the movie, “Draft Day.”
As in life itself, especially following traumatic events such as being on the receiving end of a terminal diagnosis and prognosis, it is very easy to become overwhelmed with the events of each passing day. Before we realize it, we find ourselves rushing from one moment to the next until, without warning, daily life becomes one big blur.
In retrospect, when I put Sonny’s mindset into the context of caring for a TiLO (“terminally-ill loved one”), I could not stop the progression of their respective illnesses, one of the most important steps that I undertook was to assist my terminally ill loved ones to maximize the quality of each day. Their ailments, to the greatest extent possible, became almost secondary to living each day, one day at a time.
Though we could not stop the ticking clock following the issuance of the terminal diagnosis and related prognosis, we could find a way to slow it down. We created a “heaven on earth” environment, customized to each respective loved one as defined by their interests, desires and needs, only tapered by any physical limitations caused by their medical condition.
For instance, my mother was diagnosed with congestive heart failure and told that she had three months, at best, to live. Although the hospital had virtually given up on her and discharged mom after only seven days as they were unable to stabilize her condition, as this was a hospital policy; through the good graces of a very proactive Palliative Care physician and his team, via daily e-mails, we were able to work together to restore her vitals over a two week period after getting her settled in our home.
Mom had shared with the Palliative Care team, as well as with us, that it was her desire to live as long as possible. As her heart was extremely weak, the only way that we could possibly meet her desires was to minimize any further strain on her heart. In order to do so, contrary to the wishes of an initial hospice care team that I fired immediately, mom chose to be bedridden with the exception of us using a wheelchair to give her a change of scenery from time to time or when venturing out for appointments.
Prior to mom’s condition changing so suddenly within a couple of weeks after her former doctor had changed one of her prescriptions — which, of course, congestive heart failure was one of the potential side effects — she was always very independent and very active and mobile with the assistance of her trusted wheeled walker.
So, faced with limited mobility, I converted a home office into mom’s personal heaven on earth. In addition to placing her bed near the window where she could look out every day, hear the birds and surrounding sounds, take in the fresh air and feel the gentle breeze in the morning and evening, I also brought in a lot of her personal keepsakes, pictures and many of her comfort clothes that she loved to wear.
At the same time, I also surrounded mom with a lot of her favorite Japanese movies and music and, with Mel’s help, we made it a point for mom to enjoy Japanese home-cooked meals for breakfast, lunch and dinner. Our teenage son, Nick, also helped with preparing some of his grandmother’s favorite Japanese noodle dishes (i.e. Udon, ramen, etc.), while his younger sister, BW, would spend quality time reading to her grandmother as well as listening to music or watching movies with her.
At the start and end of each day, my Japanese mom and I would share at least one word in her native language. Little did I know at the time just how important this particular habit was until about five to six months in, when my mother awoke one morning and could only communicate in Japanese. Fortunately, our daily morning and evening routine had brought back some of my basic Japanese language skills plus, although mom did not recognize me for a period of about six hours, when I spoke to her in Japanese she was familiar with me speaking Japanese to her over the months, and she actually thought that I was her doctor. Later that afternoon, mom regained her English-speaking skills and was able to recognize me once again.
About forty-five days later, when mom was in a semi-conscious state, even though she was unable to communicate with me, I still continued the habit of saying Japanese words to her each morning and at night. Although she never opened her eyes or spoke again during her final ten days, when Mel and I went into her room one evening after a very eventful, medically challenging day that I was able to get through in keeping mom comfortable, I said, “Okasan, daijobu,” to which mom replied, with a little smile without opening her eyes, “daijobu!”, as she expelled her final breath.
In translation, I essentially asked my mother if she was okay, to which she replied, “I am fine.”
Earlier that day, during a visit with mom’s Palliative Care doctor to pick up a supply of large gauge syringes and some prescriptions that I needed to administer via injections to help alleviate some of mom’s late stage symptoms to keep her comfortable, I had inquired with him as to his thoughts as to how my mother had outlived the prognosis by at least five months. He replied, “David, I believe that the loving environment and care that you and your family provided played a big part in extending her life beyond the original prognosis of three months.”
As I have shared in earlier blog posts, each of the final life journeys that I shared with my TiLOs were as unique as each respective loved one. The “heaven on earth” shared with my father was a 10-day road trip…via car and plane…back to his hometown and state, while for my beloved wife, Melanie, it was a 15-month magic carpet ride with the assistance of a wheelchair that enabled us to get out each and every day, as well as take a number of road trips by car since her condition prohibited her from flying.
Please note that while I can truly appreciate the common refrain of “only God knows how much time we have…”, following a terminal prognosis, my objective was to focus on how to help my loved ones make the most of each day regardless of their condition. If they lived beyond the given prognosis, this provided even more days to share.
As I have shared with others over the years, whether they be the terminally-ill patient or their loved ones, rather than investing a lot of negative time and energy towards the doctor(s) or focusing on how much time was stated, make every effort to focus on how to make the most of each day one day at a time.
As always, great big hugs to one and all!!!
~D. Toru White~
“When you love someone, you will do anything to keep them from dying,” said Shaun, the main character in the hit TV medical drama, “The Good Doctor,” when conversing with a fellow colleague following a sudden terminal diagnosis given to his mentor and good friend, Dr. Glassman, during an episode in Season 1.
As I heard those hauntingly familiar words, my eyes began to water. It brought back vivid memories of the first time that I had this same exact thought on a fateful Sunday morning in June 1992. My younger brother, Jimmy, called me to share the devastating news of a terminal prognosis that he had just received that morning.
Almost instinctively, my first thought was that I had to do everything possible to keep him from dying as he was only 29 years old, just six months shy of his 30th birthday. Although Jimmy and I were polar opposites in nearly every aspect of our beings and interests, the love that we shared was second to none with only one exception…the loving bond between him and our mother, Hideko, as he would forever be her “baby.” This fact made it even more imperative that I find a way to help Jimmy extend his life well beyond the terminal prognosis of five to six months.
Armed with some basic knowledge about HIV and AIDS that I had picked up from my new collection of medical books on this infectious disease, I jumped in with both feet to help my brother extend his life well beyond the terminal prognosis. Over the course of the next five months, I did everything humanly possible and then some, hoping to increase my chances of success. I knew no limits as I was getting about three to four hours of sleep each night, working full-time, taking Jimmy to all of his appointments, medical errands or visits to the hospital, caring for him at his home during and after my work hours, plus tending to the needs of my wife, Melanie, and our 3-year old son. About two weeks in all of the days just seemed to string together.
Aside from an unexpected 30-day reprieve in August when Jimmy’s symptoms seemed to finally be contained, at least temporarily, providing some short-lived hope that the hard work, sacrifices and focus was working, regardless as to how much effort was being expended, keeping him from dying became a greater challenge with each passing day. He passed a couple of days before Thanksgiving. I had failed to not only keep him from dying but also from reaching his 30th birthday. No matter how hard I worked I could not stop him from dying.
It was not until four and a half years later while helping care for my terminally-ill uncle, did I come to realize that my focus had to be on “doing anything to help my loved one live,” rather, than, on “keeping them from dying.”
This new realization was much more than a matter of semantics. It would literally prove to be such a life changing revelation just one year after my uncle passed, when my father called me to inform me that he had been given a terminal prognosis of six months.
Instead of trying to keep my father from dying, right from the start all my efforts shifted to focus on how to help him live each day to the fullest while, at the same time, I continued to research for potential treatment options. Fortunately, with the passage of time, by 1998, the Internet was more commonplace and provided me with access to a broader range of medical information. Despite the extremely challenging symptoms that he endured the final week of his life journey, I believe that our shift to focus on living actually contributed to a more peaceful passing.
I continued to take this same approach when caring for my terminally-ill mother just eight short years after my father died. After having cared for three TiLOs–my endearing term used to refer to “terminally-ill loved ones”–over the course of the previous 14 years in their respective homes, for the first time, we would care for a TiLO in our home. My mother had been given a terminal prognosis of three months at best. Long story short, she lived for eight months. On what turned out to be mom’s final day, while visiting her Palliative Care physician to pick up some additional comfort meds, I asked him how was it that mom lived for five months longer than the original prognosis of three months. He responded, “David, it was probably because of the loving care that you and your family provided by caring for her in your home.”
Then, four short years later, we found ourselves in one of the toughest life challenges that I could have ever imagined. Melanie, my lovely wife, would initially be diagnosed with a rare combination of two of the most aggressive types of breast cancer—TNBC and IBC. During the course of the final 15-months of her life journey, which did not start out as terminal, she received two separate terminal prognoses. After beating the first one, she would receive a second one in May 2012 which eventually claimed her life after battling a very aggressive, rare form of brain cancer for three months known as leptomeningeal carcinomatosis.
While we focused on living each day to the fullest, I also utilized every available resource to find a way to try to slow the progression of the “lepto” as we believed that with each day that Melanie could open her eyes to a new day, there was hope that someone just might come up with a more effective treatment option.
The moral of the story as I have discovered as a direct result of my experiences with walking with five TiLOs during their final months of life, when you love someone, do everything possible to help them make the most of each day, one day at a time. As long as they are able to draw another breath, they are still living.
As always, great big hugs to one and all!!!
~D. Toru White~
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:
~D. Toru White~
Take My Hand 