How do we best prepare for a transition from life to death?
Death is an inevitable part of life and yet, it is considered taboo in many societies to speak of it for fear of inviting misfortune. Death is sad, scary, and makes us feel uncomfortable, and for that, we’re often careful to steer clear of the topic. However, it is a necessary conversation to have. How do we provide the best care to someone at the end of their life? How do we prepare for after-life matters? What are some things we, as caregivers, should be aware of?
In this interview with Erica Wu Yun, Nurse Clinician at Allium Healthcare, we talk about dying, end-of-life care, and the support caregivers can receive from Allium Healthcare.
How do we know we are dying? Are there any signs and/or symptoms that may indicate a need for end-of-life care?
We will not know when we are dying, actually.
As for patients/residents, after rendering care to them over a period of time, intuitively palliative-trained staff are able to spot the changes in breathing patterns, body temperature fluctuations, declining functions, decrease in appetite or poor feeding, moulting on extremities, and urinary output for the bed-bound who are cognitively impaired.
Changes in breathing patterns
Caregivers/palliative-trained staff will notice that the patient may start to breathe with their mouth opened as their muscles become more relaxed. This will be followed by either a shallow or irregular breathing pattern and the patient may take long pauses (between 10 to 30 seconds) of not breathing.
Body temperature fluctuations
Another sign or symptom would be that the body’s temperature may change. At one time, the patient’s hands, legs, and feet may become increasingly cool to the touch, and at others, they may be hot and clammy. At times, some parts of their body can become blotchy and darker in colour.
This is due to the circulation of the blood slowing down and is a normal part of the dying process.
Moulting on extremities
When the limbs on the patient/resident turn increasingly cool to the touch, and their face turns pale. It is not usual to find the soles of the feet and legs turning into a purple-blue mottled colour.
Declining body functions
When a person is reaching the end of their life, caregivers/palliative-trained staff will notice that they may spend a large amount of time asleep and may be drowsy and difficult to wake up. This change is normal and is partly due to the chemical changes in their body and brain.
Due to the decrease in the circulation of blood to the brain and changes happening in their body, the patient may sometimes become restless or confused. One sign to look out for is when the patient starts to display repetitive movements such as pulling at their clothes or the bed linens.
Decrease in appetite or poor feeding
When a person is towards the end of his/her life, their appetite and thirst may also decrease, and they have a little desire to eat or drink. The person does not require many calories at this stage of their life.
Although this may concern many caregivers, this is a natural process, and it is not painful for the patient. However, attempting to feed someone who is unable to swallow may cause them distress, and we’d advise seeking a nurse/palliative-trained staff to help.
Unable to control urine and bowel movements
Another sign or symptom that caregivers/palliative-trained staff will notice is that the amount of urine that the patient’s body is producing would decrease due to the reduced amount of fluid the person is drinking. In addition, the urine may become stronger and darker in colour.
For patients who are bed-bound or cognitively impaired, carers have to be supportive and change bed pads often or use a diaper if necessary. There are barrier creams that can prevent skin from coming into contact with excretions while handling the process.
However, do note that the signs and symptoms vary across individuals and not everyone will experience them. It is not easy to tell sometimes, as some patients/residents will go in their sleep.
What are some things a caregiver should expect in providing end-of-life/palliative care to a loved one?
At Allium Healthcare, we understand that the caregiver role is one that is full of many emotions and challenges when it comes to providing end-of-life/palliative care to a loved one. It is common for one not to know what to expect and the stress of having to juggle multiple responsibilities.
The purpose of end-of-life/palliative care is to improve the quality of life, alleviate pain, and respect their loved one’s dignity. Patients could be suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and many more.
As end-of-life care can last between days and months, caregivers can provide physical comfort and manage the mental and emotional needs of their loved ones.
Providing physical comfort
Although not everyone who is dying experiences pain, and for those who do, carers should take good care in administering the pain medication as prescribed by the doctor. It is imperative for the caregiver to exercise calm and compassion when faced with a loved one who is struggling with severe pain.
The person could be suffering from physical ailments such as breathing problems, skin irritation, digestive problems, temperature sensitivity, fatigue, and more. If the pain is not controlled even after administering the medication, carers should consult with a doctor/palliative medical specialist if they’re not already involved.
Keeping Track of Prescribed Medication
As a caregiver, it is common for carers to be responsible for handling medical appointments, dealing with billing and insurance issues on top of picking up and administering medication to their loved ones as part of end-of-life/palliative care. For some, they will have to go the extra length of being trained and educated on how they can assist with other medical processes such as administering injections, proper handling of feeding tubes, planning physical therapy, and more.
Caregivers can expect certain challenges such as their loved ones being resistant to taking their medications. However, this could be due to several reasons such as experiencing adverse effects after the person consumes their medication. As most drugs do possess a side effect, this can result in a significant amount of discomfort or unpleasant taste for the person, hence putting them off adhering to their medication plan.
Another possibility is if their loved one has difficulty swallowing the medication pills, due to their declining state of health.
To overcome these challenges, caregivers should exercise compassion and create a calm and relaxed environment for their loved ones during the medication process. If they observed that the person has had adverse effects or trouble swallowing a particular medicine, they can ask the doctor or pharmacist if it is available in a smaller-sized pill or liquid solution that would be easier to swallow.
As a caregiver, they’d be the key person that would notice any changes in the person’s health/behaviour and know what they’ll need. It is helpful and advisable for carers to communicate with healthcare providers/palliative-trained experts for tips or attend relevant caregiver training to help them be better informed.
Managing mental and emotional needs
For someone who is aware that they are near the end of their life, it is understandable for some to feel anxious or depressed. As a caregiver for your loved one, whether untrained or non-professional, one can provide psychological support such as being there as a silent companion.
The dying person may have fears and concerns, experience mental confusion, or have strange behaviours that add to a sense of isolation. Carers can try to manage the mental and emotional needs of their loved ones by providing physical contact such as holding their hand or giving a gentle massage to show that they are present. If the person is still able to communicate, carers should ask them what they’d need to alleviate any anxieties/stress.
What are the main challenges of providing such care?
The main challenge is caregiver stress. As caregivers often are so busy caring for their others, they tend to neglect their own emotional, physical, and spiritual health. The demands can easily seem overwhelming, which could lead to fatigue and ultimately burnout. Caregiver burnout is a state of physical, emotional, and mental exhaustion. It is understandable as seeing their loved ones suffer from lack of appetite or struggling with the pain and discomfort or for some, not necessarily knowing what to do, can amount to stress and sometimes depression.
The signs and symptoms of caregiver stress include feeling alone and isolated/deserted by others, feeling overwhelmed and fatigued, feeling worried or sad often, losing interest in activities that you used to enjoy, and more. It can be dangerous as long-term stress can lead to serious health problems such as depression, anxiety, weak immune system, obesity, or a higher risk for chronic diseases.
People who are suddenly elevated to the position of caregiver can experience confusion in their role. It can be difficult for some to separate their mindset as a spouse, lover, child, and caregiver.
For untrained caregivers, they may have unrealistic expectations before embarking on the role of a carer for their loved ones. Some may expect that their involvement and efforts will have a positive effect on the happiness and health of the person. This would prove unrealistic for a person who is at the end of their life or suffering from a pain/progressive disease such as Parkinson’s or Alzheimer’s.
Some ways to prevent or manage caregiver stress/burnout are to join a caregiver support group, learn better ways to help your loved ones, and find caregiving resources in the community to help them in their tasks. By joining a caregiver support group, carers can pick up tips and get support from others who face the same challenges as they do. Carers can take up classes or join webinars conducted by Allium Healthcare or hospitals, which have palliative-trained experts teaching caregivers how to be better carers and give tips to help them in their role.
Besides end-of-life care, how should one prepare for coping with the challenges of dealing with a departing loved one?
Engage professional help to attend to things such as pain management (where medication is needed), fluctuations in body temperature, hygiene matters (oral care), or just being there and providing support for caregivers.
Professionals will engage in conversations to help the caregiver understand the dying process (Thanatology). At Allium Healthcare, we also encourage closures (e.g., fulfilling the last wishes of a departing loved one).
Currently, what are the options available for end-of-life care in Singapore? Is Singapore doing enough to ensure sufficient support for caregivers and patients?
In Singapore, there are various hospices that provide in-patient end-of-life care for various conditions, as well as home care services.
However, I feel that more can be explored in Singapore to assist and support caregivers and patients. According to a nationwide study1 that aimed to find out the factors that affect the quality of life for caregivers in Singapore and how their needs can be addressed, they found that just over half of the caregivers are “burdened” by or “barely coping” with their caregiving responsibilities and they feel they have less control over their lives. In addition, almost two in five indicated in their poll that they are providing care to their loved ones alone with the lack of other helpers being commonly cited as their reason.
I feel that Singapore should provide more opportunities to better equip caregivers with the knowledge, skills, and support to care for their loved ones and themselves. This could be in the form of financial aid, easy access to learning materials, and emotional/psychological support to ensure that the mental health of the carers is well taken care of.
How do Allium Healthcare’s services bridge this abovementioned gap? What does Allium Healthcare offer to support caregivers and patients respectively?
Allium Healthcare has a comprehensive palliative care team comprising Medical Services, Medical Social workers, Pastoral Support and Nursing staff. Upon admission and during ongoing treatments, there will be “Advance Care Planning” conversations.
Should the resident opt for Comfort Measures, Allium’s team will see to this aspect of care to ensure that the resident’s life meaning is achieved.
When the time arrives, the team is prepared to assist the resident and their family. We are able to admit residents directly for End-of-Life services including the arrangements of after-life matters such as their wake/cremation/burial, as well as grief and bereavement.
- Tan, T. (2022, August 19). Having help boosts caregivers’ quality of life, but many not seeking support: Study. The Straits Times. Retrieved from https://www.straitstimes.com/singapore/community/more-support-for-caregivers-after- major-study-finds-help-boosts-their-quality-of-life
About the Interviewee
Erica Wu Yun
Erica brings 15 years of experience in emergency care and cardiac nursing.
At Allium Care Suites, she is the clinical lead for eldercare, palliative care, and wound management. Erica’s responsibilities include coordinating, implementing, and evaluating client care plans, and providing an integrative and multidisciplinary treatment approach that helps our elders maintain physical, mental, and emotional health.
Working closely with our Head of Nursing, Erica plays a vital role in ensuring high-quality of care delivery at Allium Care Suites.