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Everyone hopes that when their loved ones age, they will continue to lead happy, healthy lives. But things do not always work out as planned. Physical problems may spring up uninvited, and worst yet, they don't leave easily. Chronic illnesses are a nightmare and a painful dilemma for every son or daughter who wishes to prolong their parents' lives but struggles to see them suffering.
 
So when older parents or relatives are diagnosed with an irreversible illness, we cannot help but think of whether there is any way to help them complete their last journey as smoothly as possible and without regret. Fortunately, there are a few non-government organisations that can provide assistance and training.
 
Nowadays, physicians advocate "palliative care" for people with life-limiting and irreversible illnesses. This type of care focuses on the patients' emotional and psychological needs to minimise physical pain and stress. Patients can then complete the final stages of their life journey peacefully and with dignity.
 
In palliative care, patients are sent home to get the best possible care in a comfortable home environment. Even in daily routines, such as grooming, bathing, skin care, bed turning, using the toilet, etc., attention is given to reducing the patients' suffering. If carers at home find it too difficult to handle and need help, support is provided through welfare institutions, including hospice care.
 
 
 
Preparation before returning home
Daily care
Reaching out for help
Saying good-bye
 

Preparation before returning home
 
Ensuring that the home is well prepared for return is essential for hospice care. 
 
  1. Mutual understanding between the carer and the patient


    The carer must fully understand his or her responsibilities, especially when there are more than one main carers. It is best that carers can discuss among themselves about their division of responsibilities and their availability of time, so that they can plan ahead if they need outside help. After reaching an agreement, they must find an occasion to discuss with the patient to find out each other’s views and the kind of care the patient prefers. Carers must be mindful of the patient’s reactions and feelings, but should also make the patient understand that he or she cannot over rely on them.


  2. Clinical support


    Medical aids may be needed at home to cater for changes in the patient’s illnesses and physical condition. Prior arrangement should be made with the hospital to ensure that the necessary equipment is ready before returning home. The hospital may arrange a home assessment by a therapist who will advise on what needs to be done before and after returning home. Enquiries should be made to the hospital as soon as possible if the necessary support service has not been properly arranged. This is to ensure that whenever there is any changes or deterioration in the physical condition of the patient, modification of services could be done accordingly.


  3. Careful planning


    The more complicated is the preparatory work, the better planning is required. It is useful to list out all the support items required and communicate in advance with the relevant professionals responsible for the patient, including the doctors, nurses, social workers, therapists, etc., so that all parties can co-operate as appropriate for the home-coming of the patient.


  4. Comfortable living environment


    Do provide a comfortable room at home for the patient, preferably near to the toilet to make it easy for him or her. Items that the patient uses frequently should be easily accessible and within an arm’s reach as far as possible.


Daily Care

Grooming and bathing


Patients at their final stage of life should be groomed frequently to keep the body clean and to make them feel at ease. Many patients need to stay in bed for a prolonged period and may get dirty and itchy easily. Carers should bathe them regularly. If patients have difficulty getting out of the bed, or cannot do the grooming on their own, the carers can help them wipe the whole body on the bed. Advice can be sought from nursing staff on what should be noted when grooming a patient. Bedsheets ought to be changed regularly. If the patient cannot leave the bed, professional nursing staff can give advice on how to change the bedsheet without disrupting the patient.


Moisturizing and massaging


If the patient needs to stay in bed for long time, do rub his/her limbs and back lightly with moisturizing cream. It can prevent the skin from getting dry and that will make the patient feel comfortable and relaxed. The same effect can be achieved by massaging and rubbing the head gently. If the lips and face also get dry, also apply moisturizer to these areas.


Lifting the body from the bed


After a patient has stayed in bed for some time, he can get weak in his body and need help when getting out of bed. The carer should consult nursing staff on the technique to lift and transfer a patient. Lifting a patient needs to be done step-by-step. Don’t do it hastily. If the patient is tall, extra care is needed in the lifting process. Apart from making sure that the patient would not get hurt from falling, the carer should also avoid getting hurt or falling with the patient. To avoid overstressing the carer, appropriate transfer tools, such as lifting devices, suspenders, etc. may be used when needed.


Turning the body from time to time


Patients will become weak due to prolonged staying in bed. They can get bed sores easily. It will make them very uncomfortable and bed sores can cause inflammation easily. To avoid bed sores, ripple mattresses, bed cushions, seat cushions, wrist pads, and ankle pads can be used. More importantly, the body must be turned once every two hours, from laying on the side to supine position. If the patient cannot turn his body by himself and needs help from others, you need to consult nursing staff.


Incontinence


If the patient is unable to get up to go to the bathroom, a pail, bedpan or urinal can be used instead. If the patient shows signs of incontinence, the carer can consult the nursing staff on how to deal with the situation. The problem can be alleviated with appropriate arrangements, such as placing the bed near the toilet; keeping the bedpan and the urinal at the bedside, using diapers, and also underpads to separate the bed sheet from the mattress.


Pain


Most of the patients at their final stage can become very worried when pain appears in the body. They can inform the doctor who usually prescribe them with pain killers. If the pain intensifies, making it difficult to sleep or leading a normal life, the patient can be hospitalized for a short period for close observation and control until the pain subsides. Appropriate massaging, applying hot compress (with a towel wrapped in a water bag to avoid scalding) or ice pack to relevant parts can also help relieve the pain. In addition, listen actively to the patient can also help relieve discomfort.


 
Seeking outside help

We understand that many carers are placed under tremendous and continuous pressure, both mentally and physically. Many carers are under the impression that no one else can look after the patient except themselves so that they would struggle to hold on and neglect their own needs. However, if we want the patients to receive the best care continually, carers need to rest and recognise when they need help. Do find the sources below to assist you in providing better care for the patient.
 
Outreaching services


Many welfare organizations, social enterprises and private organizations in Hong Kong provide community support services, including  Escort Service Domestic Helpers Rehabilitation Care Personal Care , Shopping and  Delivery Rehabilitative Practice , Accompanying Service and Meals Delivery . These services can be subsidized or self-paying. Some of the service providers will assess the needs of users and design a service plan based on actual needs.
 


Hospitals with hospice care  


The physical condition of patients with terminal illness may fluctuate and deteriorate over time, staying in hospitals with hospice care is a good option.

A hospice hospital is well-equipped, with a peaceful environment and 24-hours special care service, and is skilled in controlling and relieving pain and other symptoms.  Carers should consider this option if the doctor so recommends.  Some hospice hospitals are equipped with kitchen, sitting room, guest rooms and even entertainment facilities. They provide a cosy atmosphere like home.  Hospice hospitals are operated by the Government and voluntary agencies and are usually referred to by the attending doctor.  Some hospice services are door-to-door outreaching services and daytime services.

For more information, please refer to Tung Wah Group of Hospitals - Advanced Care Area Resource booklet.
 


Parting moments
 
Upon passing away, the patient's breathing will be very irregular, but most are calm at this point. Patients will fall into a coma in most cases, sometimes only for a few minutes, but it may last for several days. If a patient appears to have died at home, the carer should stay calm. First, check the patient's pulse, feel their skin; it should be cold to the touch, listen to their breathing through their nostrils, and call the ambulance as soon as possible. Call some family members or friends to keep you company. Whether the patient has passed away or not, it is not advisable to move the patient before the ambulance arrives.
 
If a patient is in a hospice hospital, the medical staff usually notify the family members at the first opportunity. Condolences are most needed at this time. Ensure that all the final arrangements are carried out according to the patient's last wishes so that they can rest in peace.
 

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