DOLPHY AND THE NEED FOR DIALYSIS

English: Dolphy, Filipino actor

English: Dolphy, Filipino actor (Photo credit: Wikipedia)

“Most nephrologists would agree that patients who are likely to have an unacceptable quality of life should not be subjected to the discomfort of dialysis. Sparing such patients the inconvenience and discomfort of hospital attendances, surgical access procedures, and dialysis treatments is a major benefit.”

– Indranil Dasgupta and Hugh C. Rayner

  Consultant Nephrologist, Renal Unit, Birmingham Heartlands Hospital, United Kingdom

A living legend needs our prayers.  Comedy King Dolphy, whose comedic talent has brought laughter and cheer to multiple generations of radio, TV, and movie followers, was recently admitted to the Intensive Care Unit and is said to be suffering from Toxic Metabolic Encephalopathy.  The illness requires regular dialysis treatment, because his kidneys can no longer do the job of removing toxic wastes from the body.  This has affected his brain function, thus the medical term “encephalopathy”, which generally refers to an illness that affects brain.  As a hospice and palliative care practitioner, I decided to look into the benefits and risks of dialysis treatment on our 83-year-old comedy king.

According to studies,  patients on dialysis are subject to much more intensive medical care in the last month of life than are patients dying of cancer or heart failure.  Data reveal that 30% of dialysis patients receive intensive procedures, a rate that is three times higher than that of cancer patients. Also, only 20% of kidney-failure patients are referred to hospice, compared with 40% of the patients dying of heart failure and 55% of cancer patients.  Among patients 75 and older, the five-year survival rate for patients on dialysis is 15%.

This brings us to some  important questions.  Is it sometimes better to provide supportive and palliative care without dialysis to an elderly patient with renal failure?  Can dialysis be safely delayed when the benefits remain uncertain at best?  What does conservative management entail, and how should it be given?

According to experts, a patient over 75 who has heart disease, diabetes, liver failure, severe chronic obstructive pulmonary disease (COPD), or other significant chronic illnesses will have little to gain from dialysis.  A more conservative approach with the consent of the patients and relatives may be better.  What could be more cost-effective is to treat anemia and ensure acid-base and fluid stability.  Health care workers who are well-versed in hospice and palliative care should also be on hand.

However, it must be stressed that data can only serve as a guide.  The best medical decisions rest on a collaborated effort between doctors, nurses, caregivers, social workers, the patient’s family, and the patient himself.  Our prayers for Dolphy would also be invaluable, not just to prolong his life indefinitely, but to pray that he is at peace with himself and with his Creator.

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JOE FRAZIER AND HOSPICE AND PALLIATIVE CARE

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“The physician’s goal  is “to cure sometimes, to relieve often, and to comfort always.”

–  Sir William Osler

Just recently, Hall of Fame boxing champion Joe Frazier passed away due to Liver Cancer.  Smokin’ Joe was Muhammad Ali’s nemesis in the “Thrilla in Manila“, one of the greatest heavyweight boxing matches of the 20th century.  In his final days, with curative treatment taking a back seat, news went around that Joe was under hospice care.  It brought a smile on my face, seeing how hospice care is now starting to emerge as a practice.  However, we may still need to strengthen research and information dissemination regarding hospice and palliative care among those outside the medical community.

Below are some of the latest research articles on hospice and palliative care.

  1. A study was done regarding the use of cancer screening procedures among patients with advanced cancer.  Such tests include mammography, Pap smear, PSA, and colonoscopy.  It was concluded that a number of patients with advanced cancer continue to undergo tests that produce little clinical benefit. This shows that those who are not familiar with palliative and hospice care principles are exposed to unnecessary tests that neither prolong life nor improve the patient’s quality of life.(Sima CS, et al.  Cancer screening among patients with advanced cancer.  JAMA. 2010 Oct 13;304(14):1584-91. )
  2. Palliative Care results in a 43% reduction in ICU admissions among patients with advanced disease, and a $464 reduction in direct hospitalization costs. (p < 0.001).   (Penrod JD, et al. Hospital-Based Palliative Care Consultation: Effects on Hospital Cost. Journal of Palliative Medicine. August 2010: 973-979)
  3.  A prospective, multisite study of 343 patients with advanced cancer revealed the following:

a.  Patients whose spiritual needs were largely or completely supported by the medical team received more hospice care

b.  High religious coping patients whose spiritual needs were largely or completely supported were more likely to receive hospice and less likely to receive aggressive care

c.  Spiritual support from the medical team and pastoral care visits were associated with higher Quality of Life scores.

(Source: Balboni, TA et al.  Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol, 2010. 28(3): p. 445-52.)

4.  The reasons why patients do not enroll in a hospice care program include patient and family misperceptions regarding hospice care, lack of knowledge regarding hospice care services, and concerns regarding access to hospice care services.  (Why Don’t Patients Enroll in Hospice? Can We Do Anything About It? Elizabeth K. Vig, Helene Starks, Janelle S. Taylor, Elizabeth K. Hopley and Kelly Fryer-Edwards)

5.   Patients with cancer who died in an intensive care unit (ICU) or hospital experienced more physical and emotional distress and worse Quality of Life at the End of Life (all P ≤ .03), compared with patients who died at home with hospice.

6.  ICU deaths were associated with a heightened risk for posttraumatic stress disorder, compared with home hospice deaths

7.  Hospital deaths were associated with a heightened risk for prolonged grief disorder (21.6% [eight of 37] v 5.2%, compared with home hospice deaths.

8.  Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%).  This shows that advance care planning is crucial in providing direction for care at the end of life.  ( Silveira MJ et al.  Advance directives and outcomes of surrogate decision making before death.  N Engl J Med. 2010 Apr 1;362(13):1211-8.)

So what are the implications of these studies?  This just shows that being cared for by a hospice and palliative care practitioner at the end of life results in better quality of life, decreased medical expenses, and better social and spiritual support for patients and their caregivers.

It’s high time that we give hospice and palliative care the importance that it deserves.


ARTIFICIAL NUTRITION AND HYDRATION AT THE END OF LIFE

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It is not necessary to feed a person when it no longer results in a better quality of life.  Surprised?  Yes, most people are.  The notion of withholding food runs contrary to our beliefs regarding care.  Just look at today’s babies.  When they cry, what do parents do to stop them?  If the diaper is dry, the next step is most likely to insert a feeding bottle into the mouth.  For adults, a get-together is not complete without food.  When we travel to faraway places, we often give food as “pasalubong” to our loved ones when we arrive back home.  No wonder why an advice of withholding feeding is often met with much contradiction from the family.  We equate food with good health, satisfactory care, and loving gestures.  So when we stop feeding, it is as if we no longer care.

Legally, all medical interventions can be refused by patients who still have the capacity to decide.  Artificial feeding is no exception, even if it results in death.  If relief of suffering and improvement of the quality of life can no longer be accomplished by nutritional supplementation and feeding, there is no reason to feed.  In an article published by the Palliative and Supportive Care Journal in 2006, it was also stated that there is no ethical or legal difference between withholding a  feeding tube versus placing the feeding tube and then later removing it.

—Despite increased nutrient delivery, trials show disappointing results in improving clinical outcome for chronically ill patients.  —Improvements in biochemical markers also inconsistently correlate with objective clinical benefits for artificial nutrition and hydration.  Minimal  benefit was also derived from enteral or parenteral nutrition in terminally ill cancer patients, other than for those with obstruction of the stomach or intestine.  Hunger is often not noted and relieved by giving the patient ice chips or small amounts of food and drink.  Dehydration is a normal component of the dying process that does not result in thirst or suffering.  In fact, treating dehydration may actually lead to more pain and difficulty.

There are some cases, however, when artificial feeding and hydration at the end of life may be warranted.  But we must always weigh the advantages and disadvantages of the intervention.  Also important to consider are the wishes of the family and the individualized goal for providing care.  Key principles to consider are autonomy (honoring the patient’s wishes), nonmaleficence (doing no harm), beneficence (doing what is in the patient’s best interest), and capacity (ensuring that the patient and the family understand the information needed to make a decision and provide consent).

It is important to understand that artificial feeding should always be considered relative to patient goals. Physicians and patients, with the patient’s family, must be prepared to discuss the options, bearing in mind the evidence that feeding will do to attain therapeutic goals.  If the viable option is to withhold feeding, don’t despair – it is totally acceptable.    Caring does not stop even if feeding and hydration are withheld.  After all, our ultimate goal is to provide a better quality of life and preserve the human dignity of our loved ones.

LIVING IN THE FACE OF DEATH

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In today’s edition of  The Philippine Star, I read an article by Fr. Francis Alvarez.  He relates his journey with a dying man named Manuel, and how he inspired the man to create a legacy by bringing his daughter back to faith.  It was a short but touching story, and it has led me to reminisce on my experiences with dying patients.  Yes, death can bring about positive changes.

As a hospice and palliative care practitioner, I have encountered 5 positive words and phrases that truly bring about positive change.  They include the following:

1.  I love you

How many of you say this to your loved ones each day?  In the case of dying patients, these words are truly miraculous.  Saying these 3 magic words prior to one’s passing, there is an air of peacefulness in the face of death.

2.  I am sorry

Truly life-changing.  Asking for forgiveness is such a heart-wrenching event.  It becomes even more significant when followed by

3.   I forgive you

The clincher.  Forgiving and being forgiven has changed so many lives.  I always remember how the sinner was able to enter paradise by asking for forgiveness and being forgiven by Christ on the cross.  It removes so much guilt and hurt, and becomes a turning point for a better life.

4.  Thank you

As if saying “It is finished”, a heartfelt expression of gratitude on the deathbed is an ultimate compliment.  It has inspired those left behind to do better and live life to the fullest.

5.  Goodbye

Releasing a loved one hanging on to dear life when the end is inevitable is so noble.  It requires exquisite will power to let go of someone so dear, but doing so is absolutely liberating.  It allows people to move forward.

You do not have to wait for the very last moments of life to say positive things.  Say they now.  Say them often.  And say them heartily to your loved ones.  In death we have the capacity to make people live by saying I love you, I forgive you, I thank you, and I am sorry.  Imagine the impact these words can have if the person still has a full life to live.  It would certainly make it so much easier to say goodbye – in God‘s time.  Just like Manuel, even at the end of life, we can create a legacy.

WINNING AND HEALING

Former basketball player Michael Jordan

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They say that “Winning isn’t everything – it’s the only thing.”  In sports, that was the battle cry of Vince Lombardi‘s Green Bay Packers football team in the 60’s.  As a sports fan, I can relate to this motivational quote to push athletes to win at all costs.  Just yesterday, in the Miss Universe beauty pageant, this “win at all cost” mindset was again highlighted by the dissenting opinion of some Filipinos regarding Shamcey Supsup’s 4th place finish.  We are naturally inclined to to compete, and when we end up on the short end of the stick, there is a certain tendency to justify the underachievement.  Hurt and frustration follow a loss, particularly when success seems to be within reach.  When it comes to medical management, is this is also the case for physicians?  Am I considered a failure if a patient dies under my watch?

When I was a young physician in training, I had this notion that I must keep all my patients alive at all costs.  I could not let my patients die – it simply was not acceptable.  If my patient dies, I would be subjected to a top-to-bottom scrutiny by my superiors.  This created in me a feeling that the good doctors before me had superhuman abilities, for whatever I did, some patients still passed when I was on duty.  Dealing with heart attacks, bleeding disorders, cancers, traumatic injuries – I had to rack my brains to find ways to prolong life.  And so what I thought  about all the time was to cover my tracks.  I needed to make sure that I never committed any glaring mistakes in managing my patients.  My perception back then was, in the medical profession, there was no room for error.

One book, however, helped me to  accept failure as part of life.  In Failing Forward by leadership expert John C. Maxwell, he mentioned a very important quote that had a significant impact on my future as a physician.  According to Dr. Maxwell, “The difference between average people and achieving people is their perception of and response to failure.”  This meant that having patients die was inevitable, but what matters are the lessons that one takes away from the experience of managing a dying patient.  From that point on, I learned to see tenets of wisdom in my errors.   While I still exert maximum effort in ensuring the best care for my patients, I no longer kick myself for not saving a patient’s life.

It must be emphasized that in sports, losing pushes athletes to strive even harder.  A Michael Jordan commercial on failure says that he missed so many shots in his career, but those misses pushed him to perfect his game.  One thing that is noteworthy about Michael Jordan’s basketball career is that he was never considered a winner when he started.  In fact, he was ridiculed by some basketball analysts for having a messianic complex.  But he learned the concept of team effort, and eventually, at the end of his career, he learned to accept losing even though he hated it.  People asked him why he came back as an aging playing after having initially retired – after all he retired as a champion.  But he was just willing to go through the process again, win or lose, because he simply loved the game and its challenges.

In medicine, this is also the case.  Patients die, no matter how much effort is exerted to prolong life.  But it must not discourage physicians to continue to care, even when cure is no longer possible.  Shamcey may have lost the Miss Universe title, but she earned so much respect for her reply during the crucial Q and A stage of the pageant.  Even the year before, Venus Raj was considered a “failure” for her “Major, major” answer.  Who would have thought that she would now have a regular newspaper column entitled “Major, major”.  There is a point of wisdom here – as emphasized by Dr. Maxwell – that in the midst of mistakes and supposed errors in life, we can always rise up and shine even brighter through a positive mental attitude.

There are things that are out of our control.  No matter how skilled and talented we are, adverse events happen.  Perhaps what is important is our desire to keep doing the right thing – to keep doing what is best – and to let our Creator take care of the rest.  After all, in the art of healing, winning the heart of a patient simply entails an unwavering effort to be the best physician you can be.

PLEASE DON’T DIE ON ME

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A 68-year-old female with stage IV ovarian cancer, whom I will hide under the name of Amy, requested me for a home visit due to difficulty of breathing. When I arrived, I first noticed her enlarged abdomen, but she was conscious. Four tubes were attached to her body for nutrition, airway support, and for draining excess body fluids. With her was her hired nurse, who was just about to wrap up her 12-hour shift. The patient was clean and the room was comfortable, and there was an indication that all measures were taken to make sure that the environment was acceptable for all family members and visitors.

Amy’s family is well off, and they can afford a hospital bed, airconditioning, and a round-the-clock 24-hour nurse. If ever hospital admission is warranted, Amy looks ready. She is undergoing chemotherapy, no longer to completely remove the tumor, but to control disease progression. She dislikes it and wishes to move on to the next life, but her family members want to do everything possible to keep her alive. This is the reason for Amy being attached to so many tubes. Upon the advise of her physicians, she needed all these contraptions.

In medicine, the goal is always to prolong life. Doctors are trained to do everything possible to keep the heart beating, and with today’s technology, there are so many ways to do this. From medications, to surgical interventions, to radiation treatments, and through the help of highly advanced gadgets and machines, a large hospital can provide the means to extend a person’s stay in this world. This, however, does not mean that the disease is being permanently eradicated all the time. More often than not, the outcome of treatment does little more than delay what is inevitable: the eventual demise of the sick individual. At the expense of maintaining a good quality of life, some medical decisions may force family members to accede to a physician’s advice due to ignorance, lack of a better alternative, or simply because of the promise of having “a little more time here on earth”.

A lot of people do not know that in most training institutions, the death of the resident physician’s patient is a cause of concern for the attending doctor. In audit conferences, medical consultants look at mortality statistics and ask a lot of piercing and not-so-friendly inquiries surrounding a patient’s death. This is a so-called “rite of passage” for the aspiring specialist. Thus, a young doctor learns to cover his or her tracks and does everything possible so that a patient does not die on his or her watch. An audit conference would mean an added workload, a possible tongue-lashing, and probably irreparable damage to self-esteem when mistakes and shortcomings are exposed.

When a trainee becomes a consultant, he carries with him this dictum: the patient must not die. He must do everything possible to keep the patient alive. If the patient’s family disagrees, this results in a very stressful situation for the physician. He suddenly recalls his audit conferences in training, and so he resorts to all arguments possible to convince the family no matter what happens. Medical expenses then skyrocket, and finances are exposed to the limit. When the patient disagrees, or when there is no other aggressive or invasive measure that can be done to prolong life, the family members are asked to sign a so-called “do not resuscitate order“, or are simply asked to go home against medical advice. Yes, it is as if in the medical field, death is unacceptable.

There are a lot of issues surrounding death. However, as we all know, for every man death is inevitable. It is all a matter of accepting it and being able to face its consequences. While both suicide and euthanasia are unacceptable, letting the natural course of illness take over is ethical and acceptable. And in certain instances, the right to withhold treatment may be necessary in order to preserve the dignity of life.

(Comments are welcome! Please click the comment section of this blog, or email me at roacruzmd@yahoo.com)

MUST WE FEAR SUFFERING AND DEATH?

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Whenever I visit a terminally ill patient, the inevitable question that is asked is: “Doc, how long will it take before I die?”. I must admit that this is not an easy question to answer, because even if there is some scientific evidence for prognosis which I can cite, I cannot act like The Creator and provide the accurate answer. One thing I can see beyond this question, however, is fear of the unknown – what happens after death? What will become of me?

The usual response to questions about death and suffering are the usual spiritual responses. We cite biblical passages, and for some, it helps to ease the apprehensions. But what if a person is not religious? What must the approach be?

For me, there is a universal principle, whatever religion you may have, that during suffering and death the source of satisfaction rests upon the presence of friends and family. I have yet to see someone who longs to die with strangers. When the time to die comes, the people you shared your life with are the ones you will long to show love and care.

So must we fear pain and suffering? My answer is, as long as the people you love and care for are around you, death becomes easier to face. It is also of great help to hear words such as, “You can rest now.”; “You’ve done a good job”; ” We will never forget you”; ” We forgive you”; “We love you very much”. These closure phrases make it so much easier to bear the burden, and it even opens up the dying patient to make amends and utter unforgettable words for the benefit of their loved ones.

So the next time a dying patient asks the inevitable query about death, just remember that the question is not a direct one that needs to be answered. More often than not, it may be a question of longing and need – and in these cases, the right response and resolution may be something that all loving persons in this world can easily provide. No matter what a physician may say, when the end is near, it is reassurance and kind words from significant others that will matter the most.

(Your comments are welcome! Please write them below this blog or send to roacruzmd@yahoo.com)

WHAT IS HOSPICE CARE?

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When a patient is diagnosed with a terminal illness for which therapeutic management is deemed futile, hospice care ensues. Hospice care does not aim to prolong life. Instead, the main goal is to make sure that a patient’s quality of life is maximized. It offers comfort care that is holistic, taking into account a person’s physical, emotional, mental, social, and spiritual well-being.
One of the misconceptions about hospice care is that it hastens death. There is no truth to this. In hospice care, although death is considered as a natural stage in a person’s existence, it is morally wrong to deliberately hasten it. In case treatment results death, the ethical principle of double effect, where the intention to do good takes precedence over a bad outcome, sustains the decision to provide symptom alleviation.
The process of death is not considered as a failure among hospice practitioners. Instead, the success of treatment rests upon the satisfaction of patients and their families. For instance, even if a patient dies, if a physician is able to facilitate carrying out the final plans of the patient through constant communication and pain alleviation, the actual death of a patient turns out to be the culmination of a job well done. A physician who also fosters closer family ties and bridges emotional gaps among the patient’s loved ones will also find a lot of satisfaction with this eventuality.
A successful hospice program also entails a team approach to patient management. While the physician, under the direction of the patient or the patient’s proxy decision maker, remains the primary source of medical knowledge, the contribution of the nurses, caregivers, and social health workers remain crucial. Spiritual support from a chaplain or a religious leader also makes a difference in creating a treatment plan.

DEALING WITH A LOVED ONE’S PAIN AND INCAPACITY

Life Is...

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What if you were told by your doctor today that you will be experiencing pain and severe disability for the rest of your life?

One of the most difficult things to accept is being told that there is nothing more that the medicine can do to cure one’s illness. A normal reaction would be to deny the fact and produce an emotional release that may precipitate to violence and harsh words towards others. This could be followed by “Leave me alone” requests, until the sick person panics when physical symptoms of distress arise. Only after some time will one be able to accept the situation and adjust to reality.

During these moments, the presence of family and friends will be most valued. Studies show that a sick person’s quality of life is higher with better social support. There is a tendency for loved ones to leave sick relatives alone for prolonged periods of time because they also feel pain and anguish. However, as caring individuals, we must remain strong and show our love, support, and understanding during these trying times.

One of the most tragic situations I see in my practice as a family physician is visiting a sick parent at home whose children are away because they are too busy with other matters. Left with caregivers whom they hardly know, these parents experience more emotional pain rather than physical symptoms. I feel sad when I get to know how they feel before they can relay it to their children. Perhaps we really are starting to acquire attitudes that used to be unheard of among Filipinos – shunning away from taking care of sick parents and preferring that they be institutionalized or left to be cared for by professional caregivers.

While I understand the need to earn a living, there is no reason to avoid interacting with our parents when they reach the end of their lives. Let me tell you that I have personally learned so much about love and life listening to a dying person. I don’t remember morbid memories – I remember invaluable life lessons from their experiences that I can pass on to others.

Do you have a loved one with terminal illness today? Hug him or her today, hold hands, and say the words I love you, I am sorry, and I forgive you. Doing this today could change your perspective about life and make you learn more things about your existence. After all, wouldn’t we want to avoid having regrets in the end when things are already too late? Never avoid your sick relatives and make them feel alone. As far as I know, those who take care of their loved ones receive so many blessings in the end.

MEDICAL CARE PLANNING AT THE END OF LIFE

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Inspite of all the advances in technology, there are still instances when curing an illness is no longer an option. At this stage, patients must be given the power to make treatment decisions. A patient may opt for aggressive measures to prolong life or stop treatment altogether, which could mean dying sooner but more comfortably. To carry out these options, it is essential to talk to your physician about having Advance Directives.

The components of an Advance Directive are as follows:
1. A LISTING OF POSSIBLE THERAPEUTIC OPTIONS
These would include being amenable to cardiopulmonary resuscitation, mechanical respiration, tube feeding or other invasive forms of nutrition, blood transfusion, surgical procedures, kidney dialysis, and antibiotic treament.

2. PRIMARY DECISION MAKERS
In case the patient can no longer decide on his or her treatment, a proxy decision maker must be designated. In the absence of this directive, in order of significance, the following may be designated: 1. the spouse 2. children above 18 years old 3. parents, and 4. siblings.

3. ORGAN DONATION DIRECTIVE
When preferred, a person may choose to have any organ donated to others upon his or her demise. The organ, or the whole body, can be donated for this purpose.

The directive must be signed by the patient and followed up periodically for any changes. Two witnesses may also appear as signatories on the Advance Directive form.

Lastly, it must be emphasized that the advance directive is not a legal document but a tool to facilitate treatment decisions.
Caring at the end of life focuses on making patients comfortable and preserving the dignity of human life. Patients still receive appropriate medications to control pain and other symptoms. Some patients choose to die at home instead of in a hospital. This is acceptable because the hospital may not be the place preferred by the patient. In either case, Advance Directives may be applied to help patients and their families deal with issues surrounding death.