WHAT TO EXPECT AS END OF LIFE DRAWS NEAR

Dying is a very natural part of life. It is a process that all of us experience. Some experience a quick death as in a traumatic accident or a large stroke, for others it is a process that takes more time.

Dying is literally a withdrawal process. The person will begin to lose their appetite, feel sleepier and will be less likely to engage in social activities, reading or watching television.

APPETITE

Often loss of appetite begins with losing interest in meat or other protein such as chicken or fish. The person will naturally be drawn to foods that are softer and easier to digest such as fruit, yoghurt, or bland soups.

Cooking smells or hot food may make the person nauseous or decrease their appetite. It is always better not to push the person to eat large amounts of foods that they don't desire. Otherwise, they will be more likely to vomit and any nutritional benefits will have been lost along with fluid and electrolytes. Try to encourage small amounts but more frequently if you can.

As the end draws closer, the swallowing reflex will diminish. People will struggle to swallow bread or textured food at first, this will extend to soft diets and liquids. Try not to feed too quickly and remind the person to swallow after each mouthful or sip. Wait until the person has swallowed and then continue. A person in the last few days of life will not want to eat as their metabolic needs are extremely low. Family often become distressed that their loved one is not eating and that they are "starving" to death or that they will become dehydrated. Forcing someone to eat or drink at this stage will only increase nausea, swelling, secretions in the lungs and risk of aspiration (food or liquid going into the airway, causing difficulty in breathing and aspiration pneumonia). Once a person struggles to swallow, it is often an indication that oral medication should be stopped, and that medication should be given via a needle (intravenous or subcutaneous) or via the skin (transdermally).

SLEEP

The process of dying also involves increased sleepiness. Initially the person may sleep poorly at night but sleep most of the day. The person will want to be in bed or on the couch much of the time and will eventually sleep most of the day and the night. It is best to allow the person to sleep as they need to. To try to keep them awake is of no benefit and will only create unnecessary stress for their body. Try to encourage different positions for sleep to prevent bed sores. An eggshell mattress and sheepskin is also very useful in this regard.

As the person becomes sleepier, the effort of socialising becomes more stressful. Ask the person who they would like to see and keep visits short. Long visits only end up in absolute exhaustion and a difficult next day. There should never be large crowds of visitors and visitors must be encouraged to speak in a gentle calm manner. Overcrowding, loud voices and great displays of emotion will only agitate the patient. If visitors want to touch the patient, they should use soft stroking or hand holding to encourage calmness. As difficult as it is to let go of your loved one, often he/she will need to know that it’s okay with you that they pass on.

Family permission to die facilities relaxation and calmness as often the person is worrying about those that they leave behind. You need to reassure your loved one that although he/she will be missed it is okay to let go.

BREATHING

As the last few days approach, you will notice that breathing patterns change. Breathing may become irregular, noisy or seem quite shallow. Often there are long pauses in breathing. The mouth will be open as the person tends to breathe through their mouth rather than their nose. This can cause the mouth to become very dry and crusted.

Use Glycerine for the lips and glycerine on ear buds to clear away the crust in the mouth. A few drops of water through a syringe or a piece of crushed ice with a small drop of lemon will help alleviate dryness and to stimulate salivary glands. Remember to give tiny amounts as the risk of choking at this time is very high.

If breathing becomes very noisy it may mean that there are some secretions at the back of the throat. It is not always a good idea to suction the secretions as suctioning can cause the throat to constrict and breathing to become more difficult. There is medication which can be given to help dry secretions. When breathing becomes like this, the patient is unaware of the process. It is distressing for the family to watch; it is generally not distressing for the patient.

LAST DAYS

A certain number of patients may experience agitation toward the last few days. If agitation is severe it is better to give a relaxing medication as agitation can be very scary for the individual. The person may feel claustrophobic and hot and may not want blankets and clothes on. Rather use a thin sheet in this case to avoid panic.

Other patients experience a "honeymoon period" where in the last few days they suddenly become alert and interactive and want to eat a good meal. Families often feel very hopeful at this stage, but the period is short lived.

SYRINGE DRIVERS

Syringe drivers or infusions are not used to accelerate death. Euthanasia and assisted suicide are not legal in South Africa. An infusion or driver is used to control symptoms of pain, nausea, agitation, or shortness of breath at the end of life. Very often the person cannot swallow tablets anymore or find it too difficult to be woken up four hourly to take oral medication. In this case a continuous infusion of medication is given to ensure optimal symptom control. Some families worry that their loved one is sedated and request that the infusion is stopped intermittently. To wake the person up so that he/she can chat to them causes the patient more suffering as they undergo withdrawal effects and rebound pain and agitation. Wanting to have the patient alert and interactive is not the patients need but the family's need.

HOW LONG?

A very common question that families ask is "how long do we have?". It is impossible to answer this. In my twenty-years of experience I have found to be wrong so many times in trying to predict. Some patients may look like they will die by the next day but continue to live for several days. Others may seem to be okay but pass that night. Doctors may be able to say that it looks like years or months or days but cannot give an exact date.

Often in the last few days the vitals show that death may be soon — the blood pressure may start to drop, the pulse rate increases, and the temperature may rise but this is not always the case. It is recommended to take each day as it comes and to try to keep symptoms under control so that the dying process is as peaceful as possible.

Individuals die in their own time and we must allow them space.

FINAL WORDS

The process of dying is like a roller coaster for both the patient and the family. Some days are good, others are not so good, and this may even vary from hour to hour. Remember that it is very normal to feel confused, angry, tearful, hopeless and a whole host of other emotions during this process. You need to eat and to get rest so that you do not experience caregiver burnout. Your loved one needs you to look after yourself.

WHAT TO DO IF SOMEONE DIES AT HOME

You need to make 2 phone calls:

• To DigniCare

•   To the Undertaker of your choice

You do NOT need to call the police as Dr Sue Walter will have already met the patient and will know what the diagnosis was that caused the death. In this case, a doctor does not need to be present to certify the death.

The undertakers will come to your house and usually arrive within an hour of your call depending on traffic and how far they need to travel. The undertakers can remove any drips, pipes or medical equipment. Please keep the syringe driver as they must be returned to the Practice.

The undertakers will collect the medical death certificate and if required the cremation notice directly from the Practice. This is not the formal death certificate. The undertakers take the medical death certificate to the department of home affairs who then issue the formal death certificate which is usually ready 7 to 10 days later. This certificate will be delivered to you or collected by you from the undertakers.

The usual procedure of the undertakers is to set up an appointment with you and the family a day or two after the death to discuss service arrangements. You will need to have a copy of the deceased identity document.

You will also need to decide if you would like your loved one to be dressing in any particular outfit and if you would like to dress your loved one or if you would prefer to undertakers to do this. Many opt not to have their loved ones dressed up particularly so there is no pressure to do this.

In summary - all you need to do is make two phone calls - one to the Practice and one to the undertaker of your choice. The rest will be done by the Practice and the Undertakers.

CONTACT NUMBERS

Practice Cell number

073 473 8688

Some recommended Undertakers:

Bernard Ives Funerals

011 485 2794

082 871 3943

Collinge and Co

011 465 3288

082 413 3943

Thom Kight and Co

011 837 5531

082 776 2189

Best Regards,

Dr Sue Walter