Palliative Care Vs Hospice

Palliative care and Hospice, both focus on making life easier for the person diagnosed with some chronic or terminal illness. Looking platonically, there is not much difference between the two. But there few major difference that are important and be taken care of.  

Palliative Care

• A patient can receive palliative care for cancer or any another serious illness. 
• Palliative care is dedicated to improving the quality of life by dealing with the symptoms from an illness( curative care).
• Palliative team generally comprises of professionals- Doctors, Nurses, Psychologist, Psychiatrist, Dietitian, Social workers.
• Palliative care is usually given in Hospital, Specialized treatment centers, Nursing Clinics, or Hospice Institutions.
• Palliative care can be received at any stage of the illness and by anyone. with serious illness regardless of the life expectancy

Hospice

• Hospice focusses on making life comfortable for the few months besides easing the pain and dealing with emotional issues.
• Hospice teams comprises of the immediate family members of the patient and visiting Doctors, Nurses, Volunteers, Social workers.  
• Hospice is in majority administered at home. The family member of the patient play a vital role. Though there are many specialized hospice centers or homes when a patient can get round-the-clock care.
• Hospice care is for patients where death is imminent i.e they have less then 6-months to live
• A patient can receive palliative care at hospice centers.

I love you, Papa!

The Gallbladder and Cancer

Gallbladder

What is Gallbladder?

The gallbladder is a pear-shaped organ that lies just below the liver in the right upper abdomen.

The gallbladder stores bile, a yellow, brown or greenish liquid made by the liver that aids in digestion of  fat.

When food is being broken down in the stomach and intestines, bile is released from the gallbladder through a tube called the common bile duct.

This tube( common bile duct) connects the gallbladder and liver to the duodenum, first part of the small intestine.

Gallbladder (Anatomy)

The wall of the gallbladder has 3 main layers of tissue.

1. Innermost Layer (Mucosal) 
2. Middle Layer (Muscularis) 
3. Outer Layer (Serosal )

Gallbladder cancer starts from the innermost layer and then subsequently spreads to the other layers. Gallbladder cancer is difficult to detect initially, primarily because there are no visible  symptoms. And when the symptoms emerge they are symptoms of various other problems and by then its too late.

Risk Factor(s )

• Porcelain gallbladder (Chronic gallbladder inflammation)
• Gall stone (Cholelithiasis)
• Gallbladder polyps
• Chronic salmonella infection
• Cyst in the bile duct
• Age
• Ethnicity
• Gender ( more prevalent among women’s)

Symptom(s)

• Abdominal pain
• Loss of appetite
• Nausea or vomiting
• Fever and bloating
• Jaundice

Treatment

• Mainly depends on the extent to which the cancer has spread.
• If surgery is still an option.
• If cancer has returned.
• General health and age of the patient.
• Gallbladder cancer can be cured only if it is found in early stages ( Stage 1 or Stage 2)  i.e before it has spread to other organs.

After the cancer has spread to other body parts, nothing much can be done. Palliative treatment remains the only option. Palliative care aims at improving the patient’s quality of life by controlling symptoms and complications as a result of disease and treatment.

I love you, Papa!

Morphine in palliative care

The best way to treat pain is assessing the pain. Knowing the root cause of the pain will help the doctor to prescribe the best type of medication.The medication can rage from a combination of different pain killers and their dosages.

Generally morphine is given to patients, when end is mostly obvious and there is no hope. For most of the patients- who are given morphine, It is generally not the stage of the cancer, but the degree of the pain endured by the patient.  The pain is constant and continuous.

Assessing Pain

To treat the pain, It is extremely important that it is analyzed properly with careful observation. The best way to assess the pain is to get the patient to talk, be involved in the treatment. Apart from this the family of the patient can monitor the patient( at least once a day) taking into consideration the following factors. 

• Physical effects 
• Practical Impact
• Emotional factors. 
• Spiritual needs

Route(s) to administer Morphine

• Oral 
• Rectal
• Sublingual
• Subcutaneous
• Intramuscular
• Intravenous. 
• Transdermal (The most common used nowadays)

Towards the end, pain becomes stubborn and responds poorly to opioids. No drugs or most of the drugs fail to provide relief from pain. However, morphine- one of the oldest drug is still used extensively in palliative care for the patients with fast approaching end.

Intolerance to Morphine

The patient tolerance to morphine can be attributed to the following factors

• Exposure to opioids in the past. 
• Hereditary
• Opioids providing no relief
• Rate of dose titration. 
• Additional treatment being given. 
• Disease related 
• Kidney and liver function.

The best way to improve  morphine intolerance is to start with a low initial dosage and gradually titrate upwards. Despite of best efforts, if things don’t change then consider substituting the opioid. 

If the condition still persist, try changing the route in which the opioid is administered. If still there is no change in the condition, then probably the pain was not assessed properly, look for other causes of pain. Besides, it is important to manage the side effects with additional medication.

I love you, Papa!

Opioids for CANCER pain

In my previous post I have talked about “PAIN” relief in cancer. In this post, I will be talking about about opioids- drugs which are used to provide some relief from the constant "difficult" pain.

With each passing day, cancer becoming more aggressive, pain becomes a 'constant' part of life. The pain is not only acute but is chronic and with time, it tends to become more uncontrollable. At this stage doctors prescribe OPIOIDS.

What are opioids?

Opioids are medicines that are used to provide relief from moderate to  severe pain( usually in cancer) .These medicines work on the principle of "reducing the intensity" of the pain signals being sent to the brain and affect those areas controlling these senses, and thereby considerably minimising the effects of the painful signals.

Opioids act much like endorphins-  natural substances created by the body to restrict or limit pain. Some of them work better than others in terms of providing  relief from terrible pain. 

Opioids were once formulated from the opium poppy( plant), but today many pharmaceutical companies are creating these drugs synthetically in laboratory, though addiction to these drugs still remains a critical issue .

Types of Opioids

Severe Pain

• Morphine 
• Buprenorphine
• Fentanyl and Alfentanil  
• Hydromorphone 
• Diamorphine
• Methadone
• Oxycodone 

Moderate to mild pain 

• Tramadol
• Codeine 

All  of the above mentioned drugs are available at drugs store strictly on prescription. 

Side effects

Most of the people taking these drugs over a period of time develop a kind of tolerance to these drugs. Therefore, the doctor has to prescribe higher dosage to provide relief from pain  or the other reason can be  increase in pain due to the advancement of the disease. 

A little  increases in the dosage or a change in the type of medicine will help in relieving the pain.

Common Side-effects

• Hallucinations
• Confusion
• Vivid dreams 
• Myoclonic jerks.
• Sedation
• Nausea and vomiting 
• Constipation
• Dry mouth 
• Itchy Skin 
• Coughing,wheezing, and shortness of breath
• Difficulty in passing urine
• Blurred vision

All these symptoms are common, and usually the treating doctors provide medicine to help overcome these effects. 

Im my personal view these symptoms never actually go away. Though the doctor’s do prescribe some medications to control these symptoms, but they prove to be of little or no help. Eventually all the symptoms emerge. ( In case of my father, where I tried my level best to read about the symptoms before hand, so that I could "prevent" them from emerging. With absolutely no result, my father went away!)

Towards the end, when pain becomes “difficult", the body has become resistant to opioids and nothing helps- the focus should be on making life easy- good palliative care.

Because you love them, tell them, show them- be with them. They need you, for the last time!

I love you papa!

Cancer- Dealing with pain

As CANCER advances, pain only increases. Treatment is almost over. Nothing much can be done now medically, only efforts to reduce the pain can be done ( Palliative Care).  Around 2/3 of the patients suffering from cancer experience acute pain. The pain is almost unbearable for the patient and is equally painful for you to see your loved one in pain. 

For treating pain, Doctors use all sorts of medicines - from simple drugs like Paracetamol (Analgesics) to Morphine (Opioids). Honestly nothing helps, but if the medicines are given timely  and in proper dosage, then they are of some help. The patient do experience some relief, if the pain has been analyzed properly and timely.

A study conducted by doctors in UK, says that Tolerance to pain can be Increased in the following ways

• Rest 
• Diversion
• Physiotherapy 
• Relaxation therapy
• Empathy 
• Support from family
• Listening to Music
• Expressing emotionally

Tolerance to pain is reduced by

• Anxiety
• Sadness
• Introvert Attitude
• Insomnia
• Socially Cut-off
• Fear
• Fatigue
• Anger
• Mental Separation
• Depression

Pain can be described as physical expression of social, spiritual and psychological isolation. To feel pain, one need not suffer. Dealing with pain, a lot of effort is required that too in a very organized and a sensitive way.

• Proper Medication
• Counseling
• Other Therapies
• Spiritual Support

Apart from all  of the mentioned above, support from family plays a pivotal role in making life easy for your loved ones. Talk to them, make them express, listen to them-After all you love them and this is the least you can do for them.

I love you Papa!

Roles Reversed

Nothing is worse than hearing that someone you love has CANCER. It's even harder when it's your parent. Like all the children, I grew up thinking that my dad would live forever. It never crossed my mind that one day even he has to go. 

So, when papa was diagnosed with cancer. I was shocked. Suddenly everything around me changed.

He always took good care of me. Now it was my turn. I could cry and sit or put a fight with "big C". I will and I will take good care of papa. At the same time, I needed to help myself to sustain through the treatments.

The doctor said, papa will live at max -9 months(in best scenario) or less. I was determined to make the impossible happen. But before helping papa, I needed to help myself. To ensure that I was ready to take on big C, I had to do something that keeps me positive and motivated. And this is what i did. It helped me. Hope it helps those who are reading.

Bucket list: I made a list of things, papa would like to do depending upon his taste. Like the places he wanted to visit, books he wanted to read, food that he loved to eat. And then, I started working towards to completing the list. 

Being available:I would try my best to be around papa all the time. And when I couldn’t, I was available on phone. I started sleeping with  phone(s) under the pillow. Calling him at random times, just to check that he was with us. I bought another phone, incase the battery betrays me. I din't wanted to take chances.

In sync with the treatment: The first thing that I would ask after meeting the treating doctors,was his phone number ( I still have their phone numbers). I would surf the internet the whole day( thanks to my the tablet) looking for the treatments, emerging symptoms etc. Knowing before hand helped me in delaying the symptoms. I could arrange for the palliative care equipments (like the alpha mattress, wheel chair, nebulizer, oxygen cylinder) in advance. Though they were not much of a help but to some percentage they did provide very little relief.

Nursing help: We all wanted to take care of papa. So nursing was not an issue. Since I would take care of the hospital, treatment, medicine, the home front was take care of by my mom and my elder ( who was the best help and took extremely good care of papa ( I love you my bro)

Note making: I started making notes by asking papa about his condition and keeping an eye on his symptoms and emerging symptoms. It helped me when we visited the doctor. These notes helped me in setting my goals and next to do.

Experience writing: I bought a diary and started writing my experiences. I would ask papa, about something and then note down his response to it. We would discuss some topic everyday. Today i have a treasure of my father’s views, thoughts, advice and guidance with me.

Family: Mine is a very united family, but after papa's CANCER, we became more close. They are my support system. They believed in my decisions, and supported me unconditionally all through and even after papa was gone. Thank you motabhai, chotubhai, momma, my love and above all my angel- thank you for being the most understanding kid.

Motivational Stories : Knowing that you are dying and people you love will be left behind, is very devastating. That's what happened to papa. After knowing about CANCER, he lost interest in everything he did or loved. It is said, that  being HOPEFUL is very important to get well. I wanted papa to have hope. And the only way to ensure was to keep him motivated and inspired. To do that, I started reading motivational stories to him. I joined forums, groups for CANCER SURVIVOR and would read out their stories to him. Sometimes he believed and looked very positive and at times he would just give up.

While in hospital, after few months of treatment, one day papa asked me, if I could get him a vaccine to help him end his life. I din't know how to react? It shattered me. I never felt so weak. I was furious. "Papa, i want you to live”, I said. After that day, he never asked. But he became quite- very quite as if he was counting his remaining days.

Papa tried hard, very hard- did everything he could do to be with me- with us. But, but - life doesn't ask you. It teaches you. As against to the doctor's predictions, papa lived for 11months …Though he lost the battle but he is still my hero. And continues to live in my heart. I am so proud of you, PAPA.

Love you, PAPA.

Chapter 5 - Palliative Care

In words of Buddha…

No matter how hard the past is, we can always start afresh

It has been more then 10months, I am still trying to come terms with my loss. Had it been that easy, then everyone around me would have been happy. Such a perfect place to live, this world would have been. But none of us is happy ( Don't go by what i say, but introspect, you will find the answers). I come across a lot of people everyday but i haven’t found one such person…who is happy enough to not complain.

I understand that starting afresh is my only option. But the time i will  take to start, only time will tell. Moving from past to present, today i want to talk about the most difficult phase of life...when with every passing moment papa was suffering more. I knew time was running out but .... I became a spectator, He could not be saved.

In my last post i talked about the doctor telling me in my first visit of making my father nearing end…”easier” as NOTHING can be done now. What he meant was they will try to lessen his pain by medicines, care and counseling. This process of “trying” to make life comfortable is known as palliative care or support care or comfort care.

Papa, received palliative care from day 1 of his treatment,  and it continued till the day when he took his last breath. We were trying, but  nothing was coming out. I was loosing hope, I was scared as a result, i  spent most of my day in thinking or reading about other forms of treatment and pain relievers. Papa was trying hard. He just wouldn’t let go. Every time the palliative care team visited papa, at least papa spoke. Papa would plan his queries and ask me to write on paper, this gave me immense peace- though momentarily. As a result i started looking forward to visit from the team, That meant so much to me. 

CARE or NO CARE, i knew the result from the very first day. Nothing helped him. Neither medicines nor our prayers. And now, all i know is my father has left me. In his life, after cancer  the only thing that gave him some relief were the pain killers. Starting form 2 tablets a day to  a day arrived, when papa was just  having  the pain killers - absolutely no food, no juice, no water. We would moisten his lips with cotton dipped in water or may be put few drop of water by a spoon. How helpless CANCER made my father.  This continued for 4 months..But he held on. And then...

Even after taking precaution(s) and trying in vain. All the symptoms came along. one by one and i could do nothing.

He went away right in front of eyes….

Love you papa!

A little more about PALLIATIVE CARE

What is palliative care?

Palliative care is usually given to patients with  life threatening or serious illness such as cancer. The aim of this kind of care, is basically to handle or treat  the symptoms or side effects of the disease  as soon as they appear. The aim is to cure as prevention is not possible. Palliative care is also known as support care, symptom management or comfort care

When to start palliative care?

Palliative care, especially in diseases like cancer starts right from the diagnosis and continues throughout the treatment.

Who gives palliative care?

Usually the treating oncologist, but other people like the pain specialist, dietician, counsellor play an important role. The aim of palliative care is to  make life comfortable.