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.

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.

HOW TO GET MORE REFERRALS FROM PRIMARY CARE PHYSICIANS

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After reading my last post on “How to Add Patients to Your Hospital”, Dr. Jet Comia sent me this reply to air his sentiment on the referral system here in the Philippines.  Here was his comment:

Based on my personal experience of running a primary care hospital for the last six years, there is not much support or “gratitude” coming from Tertiary hospital giants. Worst is instead (of) thanking (you for your) referrals, you have a greater chance of getting comments like “This is a wrong diagnosis”, or “The treatment that should have been done is…”, or they don’t even read referrals anymore, and doctors just to win patients would not care to explain the life saving measures you have done. Where is the refer back slip thanking you or (saying) “This is what we’ve done”, etc… Anyway,  I guess doctors, not all of them, once they reached the status of the rich and richer, (are) more concerned (with) the payback fee…So primary care doctors are very much overlooked and ridiculed.

Most of the hospitals who desire to have a higher market share would try to invest in sophisticated machines and employing medical specialists.  They would increase bed capacity and add new services.  They spend a lot on improving brand identity, image, and customer satisfaction.  While there is nothing wrong with these initiatives, the bottom line is this: the general public does not think about which is the best hospital – until disease strikes.  And who do they go to when this happens?  Chances are, most people would choose to go to their trusted primary care physician.

According to an article published in The New Zealand Medical Journal, only 14% prefer to see a specialist first when they need to see a doctor.  This phenomenon does not only happen in the Philippines and New Zealand, but in a good number of other countries as well – even if primary care physicians are not mandated as gatekeepers.*    Thus, for hospitals and specialists, it is crucial to exert effort to maintain an ideal relationship with local primary care physicians.  As a Family Physician and Palliative Care practitioner in a tertiary hospital, I actually get to be a primary care provider and specialty physician at the same time, so I  have an idea on how to work on both ends of the spectrum.

So what must a specialist or a hospital do to attract referrals?  Here are some suggestions.

1.  Treat primary care providers with respect.  Never show superiority of knowledge to a primary care physician when they refer patients.  Instead, view them as partners in the health care continuum so that they would refer more patients to you.  And make it a point, if possible, to teach them and add to their knowledge and competence.

2.  Know the referral practices of primary care physicians.  Find out where and how they practice, and ensure a smooth transition when they send patients to you.

3.  Acknowledge the referrals and provide feedback.  It is unprofessional not to return a referred patient to the primary care provider.  Being rude may put your livelihood at stake.  Word of mouth spreads fast, and you may find yourself staring at the ceiling and salivating at the clinic of the EQ-laden physician or hospital next to you.

Peter Drucker once said that the prime directive of a business is to acquire and keep a customer.  And it is still the referral of the primary care provider that enables specialists and hospitals to succeed.

* Patient Preferences for Care by General Internists and Specialists in the Ambulatory Setting by Lewis, et. al.  J Gen Intern Med. 2000 February; 15(2): 75–83.

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.