Palliative and Supportive Care
What is Palliative Care?
Palliative Care is a branch of medicine that specialises in providing and improving quality of life of patients and their families facing the problems associated with life threatening illnesses.
In this section, we will be talking about providing such services for patients with cancer.
What types of services does palliative care offer?
A good hospital with palliative care service or a hospice should provide the following services for patients with cancer
Management of symptoms
A patient with cancer can experience a variety of symptoms. A palliative care doctor or nurse will help manage most symptoms associated with cancer. Some of such symptoms are pain, nausea vomiting, cough, breathlessness, constipation, anxiety, depression, tiredness, weakness etc.
Patients with cancer not only need support to manage physical symptoms that are described above. They and their families need psychological support to help cope with the illness and the process of going through the treatment process of the condition. A palliative care team will offer such support.
Physiotherapy and Occupational Therapy
Physiotherapy helps in improving mobility and well being in patients who are physically limited due to cancer or its treatment. Occupational therapy helps the patient to continue to keep their independence in their daily activities.
Palliative care also aims to provide spiritual help that patients desire when confronted with cancer.
End of Life care
Palliative care team specialises in providing end of life care to patients with cancer. This type of care involves looking after patients in the last weeks or days of life. The end of life care provided by a palliative care team is very different to an end of life care provided by a hospital.
Who Provides Palliative care services?
Palliative care services can be provided by a specialist unit such as a Hospice or a Palliative Care department in a hospital or a cancer centre. Some hospitals or cancer centres do not have a palliative care department but still provide a good palliative service. Some specialist centres are also able to provide community or home care services.
Professionals involved in providing palliative care services include doctors, who are either trained in palliative medicine or Oncology. Nurses who have Oncology or palliative experience and other professionals such as dieticians, physiotherapists, occupational therapists.
What is a Hospice
A hospice is a palliative care unit looking after patients with incurable illnesses, mainly cancer. The unit provides care of patients with symptoms and also end of life care. A hospice works very differently to a hospital. The philosophy of hospice care is to provide relief of symptoms and a holistic approach to care of the cancer patient. The treatment aim of a hospice is to provide maximum comfort and quality of life to the patient over the aim of only improving the duration of life of the patient. Hospices also play a role in providing respite to relatives by admitting patients into the hospice for short periods. Relatives caring for patients with cancer sometimes continuously provide care to the patients without a rest. Giving them respite and rest by admitting patients into a hospice can be invaluable support to the family. Hospices can be run and managed by charities, government organisations or private establishments.
Should I admit my relative in a Hospice?
Whether a hospice admission will benefit the patient will be dependent on the condition of the patient at the time. The patient’s treating Oncologist will suggest when such a need arises. Some hospices provide day care services, in which case access to the hospice is there without the need for an admission. Even more, community services where a hospice nurse or doctor visits the home of the patient is also available in some places. Most hospices provide in patient services to patients who cannot be managed at home due to cancer specific symptoms. Hospices also provide end of life care where patients who are close to the end of their life are admitted there.
How is Cancer pain controlled?
Not all cancers produce pain. However, pain can be an important symptom in cancer particularly in late stage cancer. These days, with good pain control medications, pain in cancer can be controlled well in most situations. Pain due to cancer can be managed in different ways.
Pain killers (Analgesics)
Pain killers or analgesics are medications given to the patients to control pain. These medications come in the form of tablets, capsules, injections, drips, dissolvable medicines in the mouth and patches applied on to the skin. Analgesics are of different types. In simple terms, analgesics can be divided into mild, moderate and strong categories.
These pain killers are used when the pain is mild or along with other drugs when the pain is more severe. Common drugs used for mild pain include Paracetamol, Ibuprofen, Diclofenac, Aceclofenac and other anti-inflammatory drugs. These drugs can be given through the mouth as tablets or injected into the muscle or vein. Some of these drugs are available as patches to be applied on the skin.
Analgesics for Moderate Pain
When pain is moderate and not resolving with mild analgesics, the following medications are used. Weak opioid drugs such as Codiene, Dihydrocodiene, and Tramadol etc are drugs that can be used for moderate pain.
Opioids are powerful pain killers that are used to treat severe cancer pain. They are used quite commonly and are very effective in controlling pain. Opioids can again be divided into weak and strong opioids.
Analgesics for severe Pain
For pain that is more severe, stronger pain killers such as opioids are used. Opioids are powerful pain killers that are used to treat severe cancer pain. They are used quite commonly and are very effective in controlling pain. Morphine and its derivatives such as Oxycodone, Fentanyl, Diamorphine, Hydromorphone, Buprenorphine and Methadone are very strong pain killers and can work well in treating severe pain associated with cancer. Ideally only a specialist in Cancer care should prescribe such medications as expertise is needed to handle and prescribe these medications to patients with cancer.
Morphine is available as tablets, injection and as a drip. Which form to choose depends on the type of pain and the severity of pain. Opioid medications have some side effects which are listed below. Most of these side effects can be managed and should not be the reason to discontinue the medications in most instances. Side effects of strong opioids include
Drowsiness and Sleepiness
Itchiness of Skin
Difficulty passing Urine
Feeling like Vomiting
Jerking movement of body (myoclonic jerks)
Opioids are not addictive when used to treat pain in cancer. They are very good pain killers and sometimes the only medications that can control the pain.
Buprenorphine is an opioid based drug and commonly used to control pain in cancer. There will be various dose ranges which can be used, and the dose is titrated depending on the amount of pain the patient has. This patch is applied onto the skin and has to be changed every 7 days.
A common form of use of Fentanyl is the use of a patch that is applied to the skin. This patch is changed once every 72 hours. The following points have to be noted if such as patch is being used by the patient.
-When a Fentanyl patch has been put on for the first time, continue to use the previous pain medication for at least 12 hours as the patch can take that much time to start being effective.
-Apply the patch on a non-hairy part of the skin and in a dry and safe area to prevent the patch from falling off.
-The patch should be removed if the patient has become too drowsy.
-Have a back up medication when on the patch in case the pain increases at certain times of the day or night.
Steroid medications such as Dexamethasone are used to good effect to control cancer pain. Drugs normally used to treat fits are used to treat a type of pain called nerve pain caused by compression of the nerve due to cancer.
Radiotherapy is a very good option to control pain in certain settings such as pain due to spread of cancer into the bones or other organs. Radiotherapy can be effective in up to 70-80% of the times to control pain. Usually 1-10 treatments are adequate for this.
It is important to note that all these medications have to be used under strict medical supervision and not without as significant harm can be caused to the patient if not used appropriately.
In situations when pain is severe and not settling with standard treatments such as analgesics, radiotherapy etc, nerve blocks can be tried. These treatments involve injecting drugs or other substances into nerves or ganglions to stop the pain. This treatment is used commonly in Pancreatic cancer to control pain. Pain specialists, anaesthetists and sometimes interventional radiologists are usually the specialists who do these procedures. A nerve block can be successful in controlling the pain reducing the severity of it.
Patients with cancer can have a variety of symptoms that can be controlled. Common symptoms associated with cancer apart from pain include
This is a common symptom of cancer and limits the amount of activity a patient can do. The tiredness can be a direct result of the cancer or due to reduced function of a certain organ as a result of the cancer in that organ. Tiredness can also be due to the effect of treatment that is being used for the cancer. Taking adequate rest during the day, managing a reasonable diet and not taking part in activities that cause symptoms can help minimise these symptoms
Lack of appetite
Reduced or lack of appetite is a common symptom related to cancer. This again can be due to the cancer or its treatment. Ways to improve this symptom include taking small meals more times a day. Certain medications can sometimes be used to help with appetite.
Weight loss is a symptom due to cancer, particularly advanced cancer. These symptoms can be improved by eating a high calorie diet. As weight loss is commonly associated with lack of appetite, reduced food intake will add to it. Having a number of small meals a day rather than three big meals may be a better way of maintaining the weight. Eating a high fat, high calorie diet will provide more energy even with small quantities. Addition of nutritional supplements like protein powder or high calorie powders to the normal meal will also help.
Nausea and vomiting
Nausea is a feeling of the need to vomit. Nausea and vomiting are common in cancer patients. A lot of times it is due to the treatment of cancer, particularly chemotherapy. Very good anti vomiting medications are available these days to control these symptoms. At other times, vomiting happens as a result of either due to abnormal levels of chemicals in the blood or due to blockage of the intestine due to the cancer or due to the presence of cancer in the brain. In such circumstances, treating those specific causes will help reduce the symptom.
Diarrhoea or constipation
Diarrhoea involves passing of motion number of times a day. The motions are loose. Constipation is the difficulty with passing a motion. These symptoms are common in cancer and are due to the disease or its treatment. Most of the time, these symptoms can be well controlled with medications.
These symptoms can be due to many causes including medications, abnormal levels of chemicals in the blood like Calcium etc. or presence of cancer in areas such as the brain. Finding the cause and treating it will help relieve the symptoms.
Difficulty walking or leg weakness
Unable to pass urine or no control over passing urine
These symptoms can happen if there is involvement and compression of the spinal cord from the cancer. This can happen in patients with cancer that has spread to the bones in the spine. The patient will notice gradual weakening of the limbs (arms or legs) as well as decreased or increased sensation on the skin. This may or may not be associated with difficulty with passing urine or loss of control of passing urine or motion. If above symptoms happen, an Oncologist should be consulted immediately. Treatment involves Radiotherapy or sometimes Surgery followed by Radiotherapy.
This is a symptom in advanced cancer and is usually due to the presence of cancer within the lungs. Breathlessness is controlled with medications and Oxygen support when needed. Treating the cancer itself can help with the symptoms. In patients who are severely breathless, having Oxygen at home for continuous use will help in improving the quality of life for the patient.
End of life care involves looking after a patient who is close to the end of his/her life. This situation arises in cancer when the patient has had all possible treatments that they could have or are unsuitable or unfit to have more cancer treatments, the cancer continues to grow, and the patient’s survival is very limited. The overwhelming aim in end of life care is to provide care and comfort to the patient with minimal intervention and with the family and friends by their side.
What symptoms can be present in such a patient?
In patients with end stage cancer who have very limited survival, the symptoms that can be present include pain, weakness and tiredness, unable to walk or get out of bed, breathlessness, cough, confusion, increased sleepiness, lack of appetite and inability to eat among others. Symptoms can be very varied and dependent on the type of cancer present and the areas it has spread to in the body.
Should the patient be admitted to hospital for end of life care?
Ideally, the patient should be cared for at home in such a situation. This can be made possible with specialist Palliative Care or Oncological support who provide all the care the patient needs at home. This is better than admitting the patient in a hospital because at home the patient will have more time to spend with friends and family, live in their own surroundings and are generally more comfortable. If a hospice is available, that is an alternative to being at home. If all such facilities are not available, hospital admission may be required.
If in hospital, should the patient be admitted in ICU?
For a patient with end stage cancer with no viable treatment options and needing end of life care, ICU care is usually not advisable. There will be no benefit of admission to ICU. If the patient is in ICU, a lot of tests and monitoring is needed which may not benefit the patient in any way under the circumstances and cause unnecessary discomfort.
Should the patient be resuscitated in the event of a cardiac arrest?
Cardiac or respiratory resuscitation involves procedures that are done when a person’s heart stops beating or stops breathing. These procedures are standard and are done in any patient who has such an event in the hospital or outside. They can be very invasive and could cause lot of discomfort to the patient. In most situations these can be beneficial and may save a patient’s life.
In patients with end stage cancer and one whose life expectancy is very limited, cardiac or respiratory resuscitation or ventilation is not advised as it is usually futile and does not cause any benefit but a lot of discomfort and pain to the patient. An advanced directive “not to resuscitate in the event of an arrest” can be made by the patient and their family beforehand so that such resuscitation is not attempted when the situation arises.
Patients who are near end of life can have more specific symptoms such as restlessness, where they may appear restless, agitated, or confused. This restlessness is sometimes called as terminal restlessness. It can happen due to many reasons such as pain, constipation, not being able to pass urine, anxiety, fear etc. If such symptoms are present, they can be managed with medications given by the doctor.
Changes in breathing are commonly seen. Noisy breathing is common in patients nearing death. This is mainly due to build up of fluid in the throat that the patient is unable to clear, and this fluid makes a noise as the air goes in and out of the lung. This symptom can be very distressing to the family but usually does not cause any effect or danger to the patient. In patients who are close to death, the breathing can become irregular and infrequent.
Patients may lose control of their ability to pass urine or motion. They may develop either retention or incontinence of urine.
Dryness of the mouth is seen and as the patient is unable to moisten it due to being drowsy or too weak, giving small sips of water if the patient can swallow or moistening the mouth with sponge sticks can help. Water or any liquid should not be poured into the mouth if patient is not fully conscious or has difficulty with swallowing.
Most patients who are near death, are peaceful and pain free. In the minority of patients who are not, medications can be given to make the patient as comfortable as possible in that situation.
When opioid pain killers are used, one dose level may not be enough. It is common for the dose of the medications to be changing regularly depending on the amount of pain present. This is called titration of dose. When morphine or its substitutes are used, they are started at a smaller dose and increased over time until a right dose is achieved to control the pain. Sometimes other medications may be added to opioids to achieve better control. If morphine is given and is ineffective, it does not necessarily mean that it is not effective. It may simply mean that the dose used is not enough. The doctor will then increase the dose. By using the titration method, it enables the patient to be on the least amount of an effective painkiller and to minimise the side effects. Most of the titrations and changes of medications can be done on an outpatient basis. When pain is complicated or severe and difficult to manage, admission to hospital is needed to get on top of it.