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Terminal Restlessness
Dr Andrew Binns





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Terminal Restlessness


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Table of Contents

Terminal Restlessness

Terminal restlessness is a syndrome observed in patients in their last days of life. It is a variant of delirium and refers to a spectrum of signs of central nervous system irritability that may include restlessness, agitation, distressed vocalising, twitching, myoclonic jerking or recurrent fitting.

CAUSES

There are obviously multiple causes of terminal restlessness in the palliative care setting.

1. UNCONTROLLED PAIN AND OTHER SYMPTOMS

Uncontrolled pain can be a major contributor to restlessness and it is important to explore all avenues of dealing with pain, particularly the more difficult to manage neuropathic pain and pain due to anguish. Other symptoms such as dyspnoea, retained secretions and urinary retention also need to be addressed.

2. DRUGS

Many drugs cause cognitive decline, agitation, hallucinations and abnormal behaviour. Polypharmacy is common in palliative care and great care is needed to rationalise drug treatment particularly in the elderly and frail patients. Metabolism of drugs also needs to be taken into consideration with liver and renal failure so often seen in the deteriorating patient. Morphine doses can often be reduced, particularly if there is renal failure and/or dehydration. Drug interaction and side effects so often develop in a dehydrated patient with multisystem failure. Stopping drugs is vitally important in terminal care but care is also needed to continue with judicious use of analgesics, and other drugs essential for pain and symptom control.

3. METABOLIC

Uraemia, hypercalcaemia, hyponatraemia, hypoxia from anaemia or respiratory disease may be treatable but obviously should only be treated with comfort goals in mind. Invasive and detailed investigations and active treatment with unrealistic goals should be avoided.

4. INFECTIONS

Treating UTIs and respiratory infection may be helpful in reducing terminal restlessness in certain instances.

5. CONSTIPATION

This difficult problem in palliative care is worth treating diligently and may improve the mental state of some patients, but expectations should relate realistically to intake of food.

6. CEREBRAL CAUSES

Primary or secondary tumour can cause severe mental confusion and drowsiness which usually responds well to dexamethasone 4mgm qid. which can be given either by the oral or subcutaneous route (mgm for mgm). Sometimes other sedatives are needed as described below.

7. POST ICTAL

Anticonvulsants may improve the mental state for some patients with recurring fits.

8. ANXIETY

Terminal restlessness can be caused by unresolved family conflict, denial, fear, spiritual dilemmas etc. and counselling and support can be helpful in this situation.

9. WITHDRAWAL

Withdrawal of alcohol, narcotics or even nicotine in heavy users can cause restlessness in terminal patients. Simple measures such as nicotine patches can help.

TREATMENT

SUPPORTIVE TREATMENT

In addition to addressing the above causes, providing an appropriate physical environment and emotional support is helpful. Familiar surroundings and faces, family and nursing support are always helpful.

SEDATION

If, as if often the case, all the above has been attended to and there is still a need for sedation, the following medication is recommended.

The Benzodiazepines

This group of drugs is very helpful for terminal restlessness, sedation, fitting, myclonic jerking etc. They are also useful for minor procedures (eg. faecal disimpaction), and for catastrophic events such as severe haemorrhage (because of their amnesic effects). See table below.

NOTES:
1. If a rapid response is needed, use short acting midazolam or lorazapam. NB. Midazolam is expensive (nearly 5 x cost of clonazepam!) - use sparingly and NOT long term.
2. All the benzos have an anticonvulsant effect if this is needed. Clonazepam has more anticonvulsant action than midazolam.
3. Clonazepam helps with neuropathic pain if that is an associated problem.
4. Use low doses in the elderly or frail patient particularly if there is liver and renal failure, low serum albumin or respiratory insufficiency.
5. Care is needed to prevent falls and fractures in the frail and elderly on benzos.
6. Beware of the problems of abrupt withdrawal of long term benzos, particularly if short acting - fits, confusion, tremors etc.
7. Benzos have NO analgesic effect and concurrent analgesics need to be continued even in a semicomatose or comatose patient.

DrugDose & FormulationHalf LifeDose FrequencyRoute of Administration
diazepam (Valium)2.5-10mg
injection,tablet
20-48hrs1-2 x dailyoral, rectal, sublingual
clonazepam (Rivotril)0.5-2.5mg
oral drops, tablet, injection
22-54 hrs2 x dailyoral, sublingual, sc
lorazepam (Ativan)0.5-2.5mg
tablet
12-16 hrs2-3 x dailyoral, sublingual
midazolam (Hypnovel)2.5-10mg
injection
1-3 hrs3 hrly or by infusionsc, IV (used rarely in emergencies)

Neuroleptics

For the more severely disturbed and confused patient neuroleptics are often needed, sometimes in conjunction with benzos. Also if there is an adverse reaction to benzos neuroleptics may be needed. The following table shows the most commonly used neuroleptics.

Haloperidol is usually effective in targeting agitation, paranoia and fear. The intravenous route is often more effective and quicker acting than the S.C. route. Haloperidol is also an excellent antiemetic if that is required. However it has more anticholinergic side effects than thioidazine. If more sedation is needed thioidazine or chlorpromazine may be more effective but these agents have more hypotensive side effects. Chlorpromazine can be given by deep IM injection but is irritating to tissues and this may be a particular problem in an emaciated patient.

Barbiturates

For the patient with mental disturbance not responding to the above, phenobarbitone may be useful and can be given by the S.C. route in doses 50 - 100mgm 4 - 8 hourly. It can also be given as an infusion of up to 800mgm per day. It should be stressed that injectable phenobarbitone is not compatible with morphine and it should be infused through a different butterfly line.This can also be a useful drug if there is a paradoxical hyperexcitability resulting from benzo usage.
It needs to be emphasised that medications are only indicated if appropriate supportive care has not succeeded in settling the patient. Measures to help reduce anxiety by providing a well lit room that is quiet and contains familiar objects and family is often all that is required.
Generic NameApprox daily doseRoute
haloperidol (Serenace)0.5-5mg, 2-12 hrly po, iv , sc
thioridazine (Melleril)10-75 mg, 4 - 8 hrlypo
chlorpromazine (Largactil)12.5 - 50mg, 4-8 hrlypo,iv
or 100-200mgm, 8 hrlysuppos
Andrew Binns

Discussion
anxiety
Terminal Illness questionnaire
T.restlesness
i have a question about somthing and i don't know if you can anser it
About Serenace (haloperidol)
Terminal Restlessness
anxiety

kelly lynch pappas, gerryandkelly@home.com
Posted 7/7/2001 12:29 AM


I am fallingasleep on own, waking few hours later and not able to return to sleep. Have 2 small children and can't function this way. Dr. gave me 1 mg. of lorazapam that i take when i wake mid-night.Concerned about the addictiveness of this drug Should i be at this low dosage? What is that best way to wean off? I've tried .5 mg but does not work for me. Help!!!



kelly lynchpappas, gerryandkelly@home.com
Posted 10/7/2001 1:03 AM


cont'd----one week later i find that 1mg of lorazapam for insomnia is taking longer and longer to take effect- the past few nights i've taken 2mg just to get to sleep by 5 in the morning!!!!!Addiction?????Is the more common than not?????



Terminal Illness questionnaire

Amanda, portypice@hotmail.com
Posted 5/6/2001 11:07 AM


I am a 18 year old student from Canada, and I am doing a project and was wondering if one of your professions could answer my survey. It would be greatly appreciated. Please respond ASAP

Your Truly Amanda



T.restlesness

Gracie Wishnia PhD RN C, wish1146@home.net
Posted 14/3/2001 2:27 AM


I am doing research on Terminal Restlesness. What I believe is that it can be avoided if the patient has all the 'tasks' in order close to the end of life. Do you know who would be interested in funding such venture. I am dong a retrsopective chart review at this time but I would like to have money to do many more cases while living... I am a professor of nursing at a local university in Louisville KY.



i have a question about somthing and i don't know if you can anser it

elina , tinysspot@yahoo.com
Posted 19/11/2000 12:42 PM


last spring i started to feel restless for no reason at all. i just resntly graduated from high school and at the time this started i thought it was just that i was anctiouse(?) (excited) to get out of school when grad day came and went the restless feeling did not my feind told me that it will probly fade once i move out but it did not people have given me advise and tried to tell me what was wrong but none of them were right so i tried finding info on the feeling and came across your web site i know this is long but i talk alot when i wright sorry. if you think you can add to the list of advise or if you want me to give you more info because i did not really say much were i should have please wright me back. thanks



paula, locklear@goldsboro.net
Posted 8/3/2001 10:44 AM



HI

MY NAME IS PAULA
I am a young mother of a 3yr old,Ihave some type of panic disorder I always feel ancious,excited,
dizzy,my blood pressure is low,my hands will turn
so called like a block of ice,numbness,I have a
fear of death. IT is really interferring in my
every day life,I cant go do the things i would like to do with my daughter thats how bad it
really is. could you give some advice






paula, locklear@goldsboro.net
Posted 8/3/2001 10:44 AM



HI

MY NAME IS PAULA
I am a young mother of a 3yr old,Ihave some type of panic disorder I always feel ancious,excited,
dizzy,my blood pressure is low,my hands will turn
so called like a block of ice,numbness,I have a
fear of death. IT is really interferring in my
every day life,I cant go do the things i would like to do with my daughter thats how bad it
really is. could you give some advice






sailatha sampath, cssrini@bharatmail.com
Posted 26/6/2001 2:00 PM


i would be glad if someone clarify about my husband's problem.last year he started having
tremors after stopping smoking.he used to take
allopathic drugs over a long period of time.
he was diagnosed with having drug induced
parkinsonism. medicines were given which
led to involuntary movements in the leg.he was
also prescribed serenace ,which made him slow.
now they have stopped serenace but is still having involuntary leg movements.doctors concerned are unable to come up with a clear diagnosis.after taking a ct scan, doctors said that it was cerebral atrophy.he is aged 65 .
he was prescribed with tranquilisers and anti-depressant drugs but to no avail.

if someone can provide more info on this matter,
kindly do so.your feedback is appreciated.

sailatha sampath





About Serenace (haloperidol)

Julie, amjm@iprimus.com.au
Posted 6/9/2000 11:30 AM


My mother suffers from alzhiemers disease and is currently in a nursing home as we can no longer look after her at home. The doctor has prescribed 'Serenace' and since my mum has been on it she seems frightened and tells me she can see things and there is nothing there where she is pointing...she is very hard to understand as her speech has deteriorated severely so I can only understand very little of what she is telling me. I am wondering if u can tell me if one of the side effects of Serenace is 'hallucinations' I have asked around but cant seem to get a straight answer.. this is very distressing for me as I feel I cannot help my mother when she is crying and yelling that 'they' are there. Your advice on this matter would be greatly appreciated.

Thank You

Julie



Warren, warren@onthenet.com.au
Posted 17/12/2000 2:27 PM


Information on alternate medication to haloperidol
in a 85 year old female dementia patient who has had behavioural problems.



Sue Treweek, SueTreweek@aol.com
Posted 12/1/2001 4:44 PM


I was in the adult mental health system 13yrs to 22yrs and in this time was made take many drugs some with verry bad sidefects but none as horrorfying as haloperidol (serenace)
I am after any information regarding dystonic reaction to serenace with larenx spasms ??trunk.

the effects of serenace was enforced on me at thirteen within two weeks of being transfered to lowson house locked ward for assessment no mental illness found!!! Iwas given imi serenace and after I woke up I thaught that I was dying the staff left me in excrusiating pain for a number of hours before contactind the dr who eventualy came I was cleaned up and given a matress before he arived there was a panic and I was given iv cogentin to try and stop the reaction.
this went on for two days on and off only the dr explained to me what was hapening but two a 13yr old that made no sence I pleaded for them to stop the pain.
This torture was repeated time and time again at least 20 times.

** started with stifness in jaw and mouth moved to limbs,neck and eyes roled back in head exteme cramps and body moved uncontrolably wierd postures.Once it took over the rest of my body and the muscles started cramping Im not sure what was worce the excrutiating pain of cramping or the fear of what was hapening to me would I die this time screaming for help.

THROUGH MY EXPERIENCE OF SERENACE I LEARNT THAT THERE IS NO PAIN THRESH HOLD THE PAIN JUST KEEPS INENSIFYING COGENTIN IS ONLY A SHORT LIVED RELEIF.
Please send me any information you have on this type of reaction please because I may soon have to prove this by testing which terifies me for reasons that are clear to me.

HELP??????.



Terminal Restlessness

Lynda Puglisi, lynda_puglisi@csgsystems.com
Posted 30/9/99 3:59 PM


I have been taking Lorazapam for about 2 years. I am beginning to develope blurred vision and am wondering if anyone else has ever experienced this with Lorazapam?



James Hankins , mrreindeer@excite.com
Posted 1/1/00 9:56 AM


I am a 40-year-old survivor of nasopharyngeal carcinoma, treated when I was 16-17 years old. I would like to suggest another possible cause of terminal restlessness: akathesia induced by nausea medications. I suffered an episode of akathesia in 1976 at a U.S. Air Force hospital in San Antonio, Texas. The second night after I began radiation treatments, I was given two injections of nausea drugs for severe vomiting. I soon noticed that I could not lie still in bed no matter how hard I tried. This was accompanied by a nightmarish anxiety that was every bit as distressing as a 'bad trip' on LSD. (No hallucinations, however.) When I complained to the doctor and nurses on duty, I told them that I had experienced nearly identical symptoms when I had taken a Haldol pill provided by a friend about a year earlier. The doctor asked me if I had taken Haldol that day. I told him that I had not. The doctor diagnosed the event as an anxiety attack and prescribed 10 mg of oral Valium, which



Claire delacey, taxus@enternet.com.au
Posted 5/3/00 5:08 PM


I think that your web site is a great idea. It's always better to inform people so that they can make educated choices for themselves.

I'm attempting to acquire information regarding the side effects of Serenace for an elderly neighbour of mine. She maintains that the drug has successfully made a dummy of her sister. Can you provide me with any information which may be useful to her in establishing whether or not she should advice her sister not to take this drug?

Many thanks in anticipation of your advice.

Claire delacey



Claire delacey, taxus@enternet.com.au
Posted 5/3/00 5:07 PM


I think that your web site is a great idea. It's always better to inform people so that they can make educated choices for themselves.

I'm attempting to acquire information regarding the side effects of Serenace for an elderly neighbour of mine. She maintains that the drug has successfully made a dummy of her sister. Can you provide me with any information which may be useful to her in establishing whether or not she should advice her sister not to take this drug?

Many thanks in anticipation of your advice.

Claire delacey



veronica hassam, ronnie.hassam@telstra.com
Posted 10/12/2000 12:51 PM


makes the patient more aggertated



John and Karla Mramor, kmmramor@cs.com
Posted 28/3/2001 4:54 AM


I am a massage therapist and my wife a music therapist, currently employed at Malachi House, a residential facilility for the dying poor (Cleveland, Ohio, USA). We are interested in studying the effects of massage and music therapies with those suffering from terminal restlessness. We are condidering writing a series of case studies in which these modalities have been attempted and/or utilized succesfully. We have found nothing in the literature related to terminal restlessness that refers specifically to these modalities.

Are you aware of any work being done in this area? Do you know of anyone we could contact regarding this topic? Do you know of any published studies related to either massage or music therapy and terminal restlessness?

Any assistance you could offer would be greatly appreciated, as we have all but exhausted our limited resources.

Thank you very much,
John and Karla Mramor



Kim, kimrph66@msn.com
Posted 3/7/2001 5:30 AM


My stepfather is very close to the end. He has suddenly become extremely restless within the last 12 hours. His hospice physician thinks it could possibly be either terminal restlessness or an adverse reaction to transderm-scop patches. What do you think? It's extremely difficult to make these calls as this doctor has never actually seen my stepfather! He is only going on what we tell the nurse and the nurse relays to him! I'm a pharmacist so I understand some of the mechanism of actions of meds, but this one has me a little baffled.

Thanks for your time,
Kim McCants, R.Ph.





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