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LEARNING ABOUT CANCER
WHAT IS MY ROLE AS A CARER?
CARERS AND THE MEDICAL TEAM
CARING FOR THE PATIENT
WHEN THE PATIENTíS HEALTH FAILS
PALLIATIVE AND ADVANCED CANCER CARE
DEALING WITH PRACTICAL & PERSONAL AFFAIRS
PRACTICAL TIPS
STORIES OF HOPE
LIST OF HOSPITALS IN MALAYSIA
SUPPORT GROUPS

 
 PALLIATIVE AND ADVANCED CANCER CARE

  We hope that cancer patients make a recovery. But if their disease can no longer be treated, you may have to face the reality that your friend or relativeís health is failing.

Palliative care basically means treatment given to provide pain relief and comfort to the patient when a cure is no longer possible. It will also include emotional support for both patient and loved ones.

Many faith traditions place emphasis on the importance of conscious preparation for death as a way of showing respect for and acceptance of lifeís final adventure. Contact with death often gives us an opportunity to become more aware of spiritual realities. Some people will feel the urge to turn to religion to look for peace and forgiveness. As a carer, you should be careful not to force feed religion when not necessary. Let your loved one make the decision if turning to religion is appropriate for them or not.

As a carer, you still have a vital role in ensuring that these final days are pain free, comfortable and peaceful.

DEALING WITH EMOTIONS

It can be very painful as you go through an emotional roller coaster. Perhaps feelings of frustration and anger you felt in the past may return. You may feel helpless or that your efforts as a carer had been for naught.

You may be afraid - unsure of what to expect or how to cope. Perhaps the rest of the family may be looking to you for strength.

Even your loved one may have issues. Some advanced cancer patients may accept their fate peacefully; others with resentment and fear.

Itís alright if you have such feelings. It is not your fault that this has happened. Stay strong. Keep in mind that you should not take on too big a burden. Get the support of family and friends to help you in this struggle.

Speak to your loved ones, sometimes they may want to live something behind; videos, poems, messages etc.

DIET FOR ADVANCED CANCER PATIENTS

The ideas in chapter 4 still apply but here are more tips:

  • Encourage your loved one to eat on days when he / she feels better.
  • Serve smaller portions of a single meal, if needed every 1-2 hours.
  • Get them to eat with others. Make meal time as fun as possible.
  • Removing medical equipment and supplies during meal times may help.
  • Try to get your friend of relative to maintain their present weight. But donít pressure them to regain lost weight.
  • Ensure all prescribed medication is consumed as instructed.

PAIN CONTROL TREATMENT

The reasons for pain are:

  • The tumour is pressing against a nerve or organ. Occasionally, the nerves carry the pain some distance from where the tumour actually is.
  • An infection may be developing at the cancer site with increased pressure from pus or fluid.
  • Scar damage on tissues due to radiotherapy.
  • The cancer may have spread elsewhere in the body (secondary site). For instance a Ďdull acheí in the limbs can be due to bone cancer.

Early Reporting

Early detection will help your loved one greatly. So pay special attention if he/she complains of pain. Try to be as specific and detailed as possible. Get him/her to:

  • Mention where the pain is
  • Whether it is a sharp sensation or a dull ache
  • Does it come and go or is it a permanent feeling
  • Does it get better or worse at certain times of the day (morning, night, etc)
  • Would changing positions increase or decrease the pain
  • Does it interfere with sleeping, eating or other activities
  • Rate it on a scale of 1-5 to which future pain can be compared and whether it resembles any other pain say like a toothache, a wound, etc.

Inform the medical team for further action. Early reporting is crucial to alleviate fears as the medical team can check and perhaps find out that the pain is non cancer related.

Dealing with Pain

As a carer, you may wish to try some techniques at home to relieve the pain. They include:

  • Complementary therapies (see chapter 3)
  • Positioning - Make sure that the body is positioned comfortably and not straining muscles or scar tissue. This applies to the patient when lying down and sitting especially. Changing positions regularly (sleeping on different sides) may help as well.
  • Temperature - Pain can be soothed by placing an ice pack or a hot water bottle over the area. The warm or cool sensation can alleviate the pain, giving relief and allowing a patient to sleep at night. Always place a protective layer before applying hot or cold packs.
  • Distraction - For some patients, it has been proven that taking their mind off the pain with pleasurable pastimes such as watching TV, playing computer games, listening to music and so on has been effective. You may want to try this.

Medical Treatment for Pain

As part of palliative care, medical treatment would involve drugs; probably a combination in different levels based on your loved oneís needs. There could also be low doses of radiotherapy, especially if the pain is in the bones and other sites.

Alternatively, both radiotherapy and medication could be prescribed for your loved one. You will be advised accordingly on palliative treatment and what drugs are being administered.

What about Addiction to Painkillers?

You do not have to worry about addiction in your relative. Patients who take these drugs for pain relief do not get addicted. It is only when the drugs are abused for recreational purposes that people get addicted.

END OF LIFE ISSUES

As your loved one slips closer to his / her final hours, your role remains to keep them pain free and comfortable as much as possible. If there are any last wishes or requests, this is the time to look into them, if you had not done so earlier.

You can draw solace that you have been with them throughout their battle; at their side and have helped to make this part of their life easier. Know that you have done all you can.

What You Should Do:
  • If your loved one is still conscious and able to speak, continue to talk to them and reassure them. Promise that all requests will be fulfilled such as location of burial / cremation, clothing to wear for the funeral and so on.
  • Allow them the final comfort of making up with friends, saying sorry, that someone will talk to their children, etc.
  • Inform and bring family/friends back home
  • Let them talk about their fears; if they wish, with a non family member so privacy is maintained.
  • Let them know that they are not a nuisance and they should not feel guilty about anything.
  • To have someone of your relativeís faith to perform any final rites if they request for it.
  • Financial matters such as drawing up a will and so on, should have been attended to earlier. If you havenít, get a lawyer to assist now.
  • Continue to offer fluids regularly to quench their thirst. Food too if possible. Donít be concerned if they refuse food and drink. Just offer again some time later. Keep a supply of ice cream, yoghurt and other soft foods if they have difficulty swallowing.
  • Positioning and movement - do consult the medical team on whether you can move your loved one to relieve pain or discomfort, and avoid sore areas.
  • Continue to provide medication as instructed.
  • Attend to toileting if needed. Have a supply of incontinence pads or see whether a urinary catheter can be fitted.

Fears of Dying

Your relative may have fears about dying; of moving into the unknown such as:

  • Pain
  • The process of dying
  • Losing their faith
  • Losing control over their bodily functions (incontinence, etc)
  • Having been a burden to you
  • Possible judgment after death based on their beliefs
  • Dying alone or in an unpleasant manner
  • Being buried or cremated alive

Understanding what theyíre going through will help you comfort them during their final moments.

At the time of death, you may wish to sit by your loved oneís bedside. Their breathing may become noisy and their body restless. These changes are part of the process of dying and are not signs of distress. They may slip into a coma and never recover.

You will know that death has occurred once the medical team informs you or there is no breathing and no pulse.

At this moment, itís alright to just sit down and gather your thoughts or cry. Do allow yourself time for it to sink in. It would be good to have friends and family around at this time.

Once you are composed, you or someone else should start looking into funeral arrangements.

 

 
A Community Service Project by: Malaysian Oncological Society and Pfizer Malaysia - (latest update: 24-02-2011)