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End of life care (EOLC)
"It is difficult to exaggerate the importance of good end of life care. After all, we only ever have one chance to get it right."www.endoflifecareforadults.nhs.uk
At some point in the course of a malignant brain tumour, it is likely that treatment options will run out. Supportive care should become the focus. But this makes it easier than it is. Decisions are complex enough without the added difficulty of highly charged emotions that may differ between family members, so it does help to have some guiding principles. If these can be discussed and agreed well in advance it enables the family to be proactive and to be more in control, rather than reactive.
I think there are three guiding principles, which should help any decision making easier, but not easy:
- The first for me would be to pursue the most aggressive treatments, but if there comes a point where these treatments are causing more harm, or are not extending the life or quality of life, then they should be stopped. But the care continues.
- The second is to plan as much as you can in advance so that the patient’s wishes are clearly stated and can be followed.
- Be firm. Know what you need in the way of support and ask, no, demand it. And if you don’t know what you need, talk to your GP. Tell them what you are struggling with. This will help you work out what the priorities are.
So ‘to dos’:
With the individual’s agreement make sure that any discussions are:
- documented
- regularly reviewed
- communicated to key people, including healthcare practitioners, family and friends.
These discussions should include any concerns, important values and goals, and to establish an understanding about the illness and prognosis, as well as particular preferences for the types of care or treatment.
A statement of wishes and preferences can be prepared, which summarises these areas. In addition, an advance decision can be completed (download the form here) which relates to refusal of specific medical treatment and can specify circumstances such as whether you would want to be resuscitated or not. This comes into effect when the individual has lost capacity to give or refuse consent to treatment. This is also know as a Living Will. More information about Living Wills can be found here
One of brainstrust’s guiding principles is to be truthful. Before you explore the next section you need to know that there may be things in here that will be upsetting. I believe in looking the tiger in the eye so that you know what you are up against. This may alleviate some fears.
These are the areas that you may want to know about, but do not want to ask, or know who to ask:
What is the natural progression of brain cancer, so that I know what to expect?
In my experience, which is based here on talking with many carers, is that the patient with brain cancer can remain stable for a period but then deterioration happens very quickly, sometimes over a matter of hours. This could be because of a brain bleed, so the patient slips into a coma. Hearing is the last sense to go, so keep talking gently to the patient as much as you can, whilst you hold their hand. In the last stage of disease, brain tumour patients present severe symptoms due to the growing tumour or to treatment side-effects, which require adequate palliative management and supportive therapy. The most frequent symptoms observed in the last four weeks of life were: epilepsy 30%, headache 36%, drowsiness/increased sleep 85%, dysphagia (difficulty swallowing) 85%, death rattle 12%, agitation and delirium 15%.Not every brain tumour patient will experience every symptom, nor does the presence of the symptoms mean that the patient is near to death.
Other signs that could suggest that death is not far away include confusion, visions, withdrawal from socialising, loss of appetite, slowing down of bladder function, a cooling of the skin, loss of vision (the patient will turn towards a light source), increased pain and involuntary movements.
Cheyne-Stokes respiration (misspelt 'chain stoking')
Cheyne-Stokes respiration (misspelt 'chain stoking') is common. This is a pattern of breathing typical of dying patients. Breathing becomes rapid and shallow, then the diaphragm flutters and stops. The patient doesn’t take another breath then they gasp suddenly and breathe very rapidly for a few seconds until their breathing returns to a shallow rapid pace again.What can I do to help?
- Talk calmly and quietly to the patient. Let them know you are there.
- Keep the patient warm with blankets.
- Leave soft lighting on.
- Keep the bed clean. A catheter and management of a catheter will be provided.
- Ice chips are excellent for keeping the mouth moist. Lip balm and swabs are also useful to freshen the mouth.
What are the likely side effects of treatments?
If the treatments are not going to prolong life and are going to have a negative impact on quality of life or add significant risk and complication to an already compromised state of health, then these factors need to be considered as part of the decision making process. Only your consultant will know what the likely side effects are going to be, depending on the treatment and current state of health. Talk, ask, and talk some more.What are the options for stopping treatment?
Some patients prefer to stop treatment and let the disease take its course. The patient may have previously signed a DNR/DNI order (Do not resucitate/intubate). This should be respected but is not irreversible if the patient changes their mind. The same with a Living Will, which specifies the what kinds of states a person doesn’t want. You can change your mind about treatments or refusal of treatment. In Living With A Brain Tumour, Peter Black says:There is no way to predict with certainty how a person’s disease will progress or how he or she will feel about further treatment at any given point. Sometimes a patient who has lived with a tumour that has been considered inoperable may begin to have more and more problems because of it. At that point, it’s not too late to consider surgery as an option in order to stabilize the person enough so that he or she can have a better quality of life.’
He goes on to explore options in supportive care:
- Choosing not to treat with antibiotics. People with fragile health are more susceptible to infections such as pneumonia or a urinary tract infection. Choosing not to take antibiotics means that the patient is likely to succumb to infection.
- Choosing not to resuscitate. If there is a cardiac arrest then the medical team would not attempt to restore the heartbeat.
- Choosing to withdraw a breathing tube or feeding tube. If a patient is dependent on a ventilator or a feeding tube then withdrawing this support will hasten death.
- Choosing to give increasing doses of morphine. Morphine is used to treat pain, but it also slows the patient’s breathing. Often, towards the end, a patient may die within twenty to thirty minutes after being given a dose of morphine.
What do I want to do?
This is the most important question. Of course we are frightened of dying. Or are we? Isn’t it more how we might die that frightens us the most? By ‘looking the tiger in the eye’ we can have more control over how we die. There was a time when it was left to the medical practitioners; not any more.
There are two ways in which you can ensure that you have control over how you die. One is to have an advance directive or living will. The second is to appoint someone who will be your spokesperson – a healthcare proxy – who can speak for you about important decisions. This will also relieve the family of having to make key decisions, which may well cause dissent amongst oved ones at a time when they should be supporting each other.
Click here for the NHS Advance Decision to Refuse Treatment form
Where can I get the practical and emotional support, which will see me through the next stage?
You can ask for help at any point you feel out of your depth, you feel overwhelmed or upset. These would be the kind of ‘asks’ that you might think about:- If the patient is in pain and is not responding to prescribed pain relief, or if you are unable to provide medication;
- If there are any signs of discomfort, such as fidgeting, grimacing, moaning;
- There is difficulty with breathing and the patient is upset;
- The patient is unable to urinate or defecate;
- The patient has fallen;
- The patient is very depressed or talking about committing suicide.
Your GP and practice nurse should be your first port of call. They will be able to unlock key resources for you such as Marie Curie nurses. You might also find it supportive to involve a spiritual leader if you have strong religious beliefs.
Types of symptoms include:
| Symptoms | Treatment |
| Raised intracranial pressure | Steroids (dexamthasone). These help to reduce brain swelling but cannot be used for prolonged periods because of known side effects. |
| Seizures | Anticonvulsants. |
| Nausea and vomiting | Antiemetics |
| Headache | Analgesics – includes opiates in the terminal phase) |
| Anxiety or depression | Antidepressants. |
How will I know when the patient has died?
Instinct will tell you. You will probably have heard the patient ‘chain stoking’ (see above). This will have stopped as the patient is no longer breathing and there is no pulse. The eyelids may be slightly open and the eyes do not move or blink. The jaw will have relaxed so the mouth will be slightly open. The body has relaxed, so there will be a final bladder and bowel movement. The patient is unresponsive. There is nothing to act for now. Take a deep breath and have some quiet moments of calm. The patient is at peace.A note about brain death. Brain death is death. When this happens there is no need to make any more decisions about withdrawal of treatment. The patient has already died. There are certain criteria, which have to be fulfilled before a patient is declared brain dead. These include lack of brain stem responses, lack of breathing, eye movements and some reflexes.
Date published: 17-05-2009 Last edited: 17-05-2009 Due for review 31-01-2012
