Doctordenky's Blog

An elderly patient was at my clinic for the second time after I discharged her from the hospital. In her previous visits, she was always accompanied by her daughter who is the main caregiver. However during the first visit, her daughter had to attend to something which has already been scheduled a long time before so the patient was accompanied by her sister.

During that visit, I noticed that the patient was not compliant with some of the medicines that I recommended. These medicines were very important because they aim to prevent the patient from being admitted again.

Most of the time, patients comply very well when they understand what the treatment is for so I took the time to explain to the patient again what these medicines will do for her. I have explained these to her when she was admitted at the hospital but I thought that she was probably overwhelmed at that time. Overwhelm is very common among patients because of the sheer volume of information and the fact that there is always a disturbance in their psyche when they are in an illness state.

So I explained to her and asked her several times whether she understood very well. She said she did and we separated on a happy note.

When I texted her daughter to ask how she is doing, she said that she is still quite uncomfortable and I was puzzled as to why. My primary objective for this patient is for her to be free of any discomfort to give her the best quality of life despite the illness.

When they came back to the clinic, she was again accompanied by the daughter. Upon interview, I noted that the patient complied with what I explained the last visit but stopped the rest of the medicines. So again, I explained lengthily why there is a need to continue the medicines and how these can give her a lot of comfort. However, I suspected that perhaps explaining is not all that the patient needs.

After our consultation, I took aside the daughter and spoke to her in private. Upon talking to her, my suspicion was confirmed. The patient may be depressed.

Where Do You Draw The Line?

According to the daughter, the patient used to be a very sociable person. She loved going out especially going to the malls. However, upon her diagnosis, she started isolating herself and did not like going out anymore. It was also very difficult for them to ask her to take her medicines and she was constantly irritated at home.

Patients normally go through a lot of emotions upon the diagnosis of cancer. To go through these emotions is normal. However, after the diagnosis of cancer and a period of adjustment, patients need to be able to carry out their roles while incorporating treatment and other changes in their lifestyle. Inability to do so warrants intervention.

When the patient or their family is already becoming so dysfunctional, when the consequences of such emotions are already mounting or when these changes have persisted for more than two weeks then these emotions are already crossing the line to being abnormal and needs to be properly addressed.

The Face Behind the Mask

Some form of distress is very common among cancer patients. According to Michelle Riba, MD of the University of Michigan Comprehensive Cancer, “About 50% of patients with cancer having some form of diagnosable psychiatric disorder sometime during their course of care”.

It is often difficult to identify distress because the symptoms can overlap with the symptoms of cancer and its treatment. According to the US National Cancer Institute, the following are misconceptions about cancer and how people cope:

• All people with cancer are depressed

• Depression in a person with cancer is normal

• Treatment does not help the stigma

• Everyone with cancer faces suffering and a painful death

Patients who are in distress and who may need help can present with any of the following manifestations:

• Difficulty falling asleep or maintaining sleep

• Loss of appetite even in the presence of one’s favourite foods

• Feelings of hopelessness, helplessness, lack of worthiness, too much self-pity

• Lack of capacity to enjoy things, lack of energy, being constantly tired

• Loss of interest in activities and pleasure

• Being constantly agitated, irritable, gets angry very easily especially with trivial things

• Preoccupation with worries

• Inability to concentrate

The Patient is Not The Only One

Everybody usually focuses on the person diagnosed with cancer. Most of the time, we do not think of the other people who are similarly affected. I often tell patients that when a family member is diagnosed with cancer, the whole family is affected. The disturbance physically, emotionally, psychologically and financially affects the entire family.

The Stigma Of Psychiatry

After speaking to the patient’s daughter, I spoke to the patient again. I told her that I am suspecting that she may be depressed and suggested that she see a psychiatrist. The patient said she would think about it.

Many patients have a very negative reaction when advised to see a psychiatrist. They often think that something is terribly wrong with them. They are afraid to be viewed as “Crazy”, “Insane”, “Cuckoo” , “Out of their mind”, “Hopeless”. But the contrary is true. Patients who submit themselves to scrutiny are actually more insightful and have more likelihood to benefit.

I had another patient who behaved similarly to the patient above. I asked her to see a psychiatrist and she agreed. After a few visits to the doctor, she came back to my clinic more vibrant, happier, peaceful and so is her family.

Our relatives only want what is best for us but they do not always know what is best for us.

I have a patient who is in the food business primarily because she loves to cook.  She gets up between 3 to 4 o’clock in the morning, starts cooking and does not stop until around 12-1 pm.  I am amazed by her ability to get up so early because I don’t like waking up before sunrise.

When we were about to start chemotherapy, she asked me if she can still continue cooking during treatment.  When she asked me, her daughter, who was seated next to her was giving me a signal to tell her that she will not be allowed to cook.

This has been a very common scenario in my clinic.  I encounter patients and relatives who seem like little children telling their mother that the other has been bad hoping that the mother will take their side.  Even for patients who are not actively undergoing treatment, relatives will automatically make the patient stop doing what they like to do.  Relatives pay attention to everything that the patient does and forbid almost everything that the patient does.  Some patients tell me that they feel like they are living in a cage in their homes.

I perfectly understand the well-meaning relatives.  Our culture generally does not have a positive association with working.  I remember that when I was in college, we felt pity towards those who were working students.  Our society frowns upon making elderly people work whereas in Singapore, they encourage their elderly people to continue working.

However, in this matter, I always take the side of the patient, with some compromise.  Firstly, because I find that most of the time, the relatives’ fears are irrational, extreme and unfounded.  Take for example, the case of developing infections during chemotherapy.  It is true that patients are very much at risk of developing infections because of treatment.  I remind them to be more diligent in handwashing, to avoid unnecessary contact with people and animals and to avoid being in very crowded places or places with poor ventilation.  These precautions, I believe, are general precautions that apply to all of us even if we are not undergoing cancer treatment.

Secondly, we all have billions of microorganisms in our body but we don’t get sick because our immune system is able to control these organisms from developing into disease.  The immune system of a patient who is undergoing cancer treatment is weakened temporarily by the treatment, hence, they are at risk of being overwhelmed by their own body’s microbiological inhabitants.  However, most of the infections that cancer patients develop are from organisms that are already residing in their body.  Caution is important but need not be irrational.

Last but most important of all is that patients want some semblance of normalcy in their lives during those trying times. Being able to continue what one loves to do gives them a sense of meaning and hope.  It validates who they are.  It makes them feel good about themselves.  It satisfies a psychological, emotional and sometimes spiritual need.  It distracts their mind from going crazy thinking about what will happen.  It does not make them feel useless and hopeless.

So let us allow them to continue BEING. I always encourage my patients to continue doing what they love to do with some precautions and compromises, of course.  I am quick to defend them to their loved ones and assuage them that we will always be cautious and always be one step ahead of any problems.  This kind of approach does not make the patient rebellious but makes them comply happily.  I have never seen a patient fall into danger by continuing to do what they love to do.  Instead, I see smiles, satisfaction, joy and a sense of hope.

Hearing of a diagnosis of cancer can devastating even if the cancer is very responsive to treatment or even if the cancer is at a very very early stage.  I hear patients say that nothing is ever the same again.

Whenever a diagnosis of illness is life changing, patients often go through disbelief or denial.  At this time, patients may request for a second opinion or additional tests in the hope that the diagnosis is incorrect.  I allow the patients to go through this especially if I know that it will help them come to terms and move on.  Requests for a second opinion should not be seen as an affront to the doctor because heeding the request will satisfy a very deep and important need of the patient.  However, we must also know where to draw the line because some patients are paralyzed by this need and delay doing what needs to be done.  Generally, if the patient has no symptoms from the disease, allowing 1-2 weeks delay will not do any harm nor have a negative effect on the treatment.

I’ve had patients who appreciated total honesty but I’ve also had patients turn very very angry on me for having told the truth.  They would find little things to blame on me and there was even one relative who banned me from entering the patient’s room.  Many patients get angry and often release this anger on their relatives, friends or caregivers.  Meeting anger with anger or impatient or being defensive will do no good.  It will only heighten the tension.  Husband and wife, siblings, caregivers, friends may start fighting.  Blaming, accusing and feeling of doing more than the others often ensue.  Understanding, patience and persistence are direly needed during these times.

Depression and anxiety can affect half of the patients afflicted with cancer.  Depression can present as a lack of focus, not wanting to go out and socialize, inability to sleep.  Sometimes, simply encouraging patients will suffice but if the situation has gotten prolonged or has prevented the patient from discharging his functions properly, psychiatric consultation or counselling may be needed.  Any emotion, if it is taking its toll on the patient, may need professional intervention and should be suggested to the patient or family regardless of the stage of disease.

Filipinos generally do not like being referred to psychiatrists.  They think that being under the care of a psychiatrist means they are crazy.  I’ve had patients never come back after I suggested for them to see a psychiatrist.  That is one of the dangers of my profession.  But to those who heeded, they are a testament that it is a risk worth taking.  Seeking psychiatric help, if necessary, can mitigate many of the sufferings the patient and family are going through.  It allows people to process and understand the situation and it makes adapting to the changes a little bit easier.

The emotions that I went through in training are parallel to what happens to a patient upon learning of a diagnosis of cancer, any major illness or any life-changing situation such as loss of a job or marital breakup.  The following were taken from the previous blog (When I Grow Up) to illustrate a slew of emotions that patients go through.

“I did not sign up for this!!!!!”  I said to myself.  “No!  I was promised that I will save them.  Probably, it’s just because the patient was already weak when he came to me.  The next patient will be ok.  I will make sure”. – DENIAL

I was still seeing patients but I was so irritable, cranky and restless most of the time.  I did not have a lot of patience talking with the relatives.  I just wanted them to disappear. – ANGER

One day I would feel ok about continuing then another day I would feel really bad and get at the brink of resigning.  But I would then find myself talking myself out of it and saying to stay for another day and see if I try harder and take a little break, I may be able to go on.- BARGAINING

If I transfer, I will disregard all the 9 months that I have gone through.  I will start from the beginning all over again.  I could not decide. I got depressed. – DEPRESSION

That was the most sincere thank you I have ever received and suddenly I knew that I was here to stay. – ACCEPTANCE

Denial, anger, bargaining, depression, acceptance or DABDA as we call them in medical school.  These were popularized by the psychiatrist Elizabeth Kubler Ross.  Patients also experience a host of other emotions such as loneliness, alienation, fear, loss of control, helplessness, hopelessness, anxiety, low mood, worry, insecurity, disbelief, desperation, shock, numbness, confusion, abandonement, betrayal, uncertainty.  The list is endless.  There is no particular sequence or duration of their occurrence.  Patients’ reactions vary a lot and are often unpredictable.

People often ask me how I deal with the situation and what I say.  It is very difficult to answer those questions because there are certain cues that I have learned to be sensitive to that are difficult to explain.  However, what is important during these times is support, physically and emotionally.  Our mere presence or simply being there can already give a lot of comfort.  What to say?  Patients may not actually hear what we say because the thoughts in their minds are so blaring that we must allow them some quiet time and respect their need for space.  I often ask whether they want to be alone or be with someone.  I allow them and even encourage them to cry because crying is comforting and it is a normal thing.  I don’t try to cheer them up, at least initially, because it may be perceived as a sign of disrespect and a lack of acknowledgement of what they are going through.

I always remember the 5 P’s of caring for patients: Presence, Patience, Pampering, Prayer and Physical comfort.

Most importantly, I need to deal with my own emotions, fears and discomfort.  Imposing them upon the patient will be a big disservice and will only further harm the patient.