Walking with your loved ones during end-of-life
It’s inevitable that someone you love will pass away – it could be a parent or grandparent, spouse, favourite relative or best friend. As your loved one is dying, you may become fearful of the unknown, wondering what will happen. You’ll want to know what to say or do so as to bring comfort during these last days.
As much as you love your family member or friend, it can be challenging to be with someone who is dying. Besides grieving, you are likely to be at a loss while figuring out what is the best way to love them during this end-of-life stage.
Some patients may perceive death as a taboo topic as they believe that talking about death may hastens the process. However, this is a myth. Although it is difficult to address end-of-life topics with your loved ones, it is important to talk about it as it helps both the patients and families better address the worries and fears leading to the final days.
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Why does planning matter?
Having conversations with loved ones about their end-of-life wishes and preferences allow caregivers to understand what matters to them. An example of such a conversation is Advance Care Planning where the patients and their family members as well as healthcare providers get together to discuss future care preferences.
This conversation allows the family members and healthcare providers to understand the patients’ personal values, beliefs and goals for medical care; explore healthcare preferences in medical emergencies including during end-of-life and appoint a Nominated Healthcare Spokesperson (NHS) to help the patients make medical decisions when they are unable to do so.
Such a plan gives patients a peace of mind that their wishes are accounted for and guides the healthcare team on how best to care for patients. The conversation may take some time – over days or months – depending on how willing your loved ones are willing to open up. This may take multiple conversations for them to get their point across so, be patient.
What can you do to support loved ones during this end-of-life stage?
1. Address feelings
An important aspect of end-of-life care includes helping dying patients manage mental and emotional distress. Patients who are still alert near the end of life may feel depressed or anxious. They may have some specific concerns, fear the unknown or worry about those they are leaving behind.
It may be useful for your loved ones to speak to a counsellor, possibly one familiar with end-of-life issues to address these feelings. Medication can also be used to treat severe cases of depression or anxiety.
READ ALSO: "I am not afraid of dying."
2. Be present
Your presence can be the greatest gift to a dying person. Hold their hands or gently massage them. Talk or read to them, even if they are unable to respond. If they are responsive, listen attentively without interrupting. Share memories of good times and reminisce about the past with your loved ones as this can be comforting for the patients and caregivers. Even if your loved ones are not conscious, they may still be able to hear you.
3. Set up a comfortable environment
An important aspect of caring for dying patients is to provide a comfortable environment for patients. Some patients prefer quiet environments with fewer people. Use soft lighting in the room and play music at a low volume – this can help the patients relax and lessen their pain.
4. Address spiritual needs
At this time, the patients’ spiritual needs may be as important as their physical concerns. This includes finding meaning in life, mending broken relationships by resolving unsettled issues with friends or family and making peace with life’s circumstances. Patients with specific religious beliefs can also find solace in their faith through prayer and the support of the religious community.
READ ALSO: Mental Health for Caregivers – Self-Care To Care For Others
5. Offer practical help
Dying patients may be worried about who will take care of things when they are gone. Family and friends can offer reassurance — “I’ll make sure your pet/child is taken care of,” “Dad, we want Mom to live with us from now on”. This provides assurance that their personal affairs are in good hands.
Walking through the final hours
As your loved ones approach their final hours, which may range from a few hours or days, they will eat less, sleep more and lose interest in activities. Eventually, they will stop eating, drinking and talking. During the final hours, blood pressure and oxygen level readings are expected to be abnormal. At this point, frequent checks will not be useful. The priority is to ensure that your loved ones are comfortable.
During this time, continue to offer your assurance by physically and verbally comforting your loved one. Hold their hands and speak gently to reassure them that you are by their side and they will be cared for.
While walking through the end-of-life journey of your loved ones, it is also important for you to take care of yourself. Acknowledging your feelings, both positive and negative, helps you to cope better. Do allow yourself the time and space to grief and deal with the pain of losing your loved ones.
READ ALSO: The Final Reunion Dinner
Accessing professional help with holistic Palliative care
What is Palliative Care?
Palliative care is a holistic approach to caring for persons in the last stages of their lives. It aims to meet all needs (physical, emotional, psychosocial and spiritual) and maximize quality of life for patients and their loved ones. It does not focus on treating the disease, but aims to minimize discomfort.
Choosing palliative care does not mean the giving up of hope. Hope continues to be important. However, it may mean redefining hope as palliative is about living life to its fullness. It allows the family to set new goals and priorities that enhance quality of life as much as possible. What one hopes for may change over time.
The palliative care team comprises of trained and experienced professionals. By supporting the primary caregiver, the family can better manage their lives, and ensure quality care for and better time with the patient.
What are the aspects of palliative care?
They include
- Symptom management
- Pain management
- Regular check-ups and medication provided as required
- Psychosocial support
- Caregiving training
The different types of palliative/hospice services include
- Home hospice (Staff visit patients in their homes during weekdays. They can give advice over telephone and make emergency visits where necessary)
- In-patient palliative care (round-the-clock medical and nursing care)
- Day hospice (The person attends the location during the day)
- Loan of equipment
- Psycho-social support group
At St Luke’s Hospital, patient care is holistic, coordinated and individualised. There is also continuity of care from inpatient, to outpatient and even in the community.
For more information about St Luke's Hospital Palliative Care, click here to learn more.
