With the advancements in medical treatment, life expectancies of those living with terminal illnesses have increased. These could range from chronic illnesses to physical and mental disabilities. Whether it is an aging parent, a spouse, or a child, with the spur of the pandemic, most have opted to care for their loved ones at home. This can be challenging at times as providing care for a family member requires love, kindness, and commitment. Sometimes they might be unable to express their gratitude. Most often family members are caught off-guard as you may have never anticipated the challenges that lay ahead. As you navigate your path to improve their quality of life, it’s important to know that there is help and support. To identify the role of family members providing palliative care for loved ones, we spoke to the College of Palliative Medicine of Sri Lanka Council Member and General and Geriatric Medicine Consultant Dr. Kelum Pelpola.
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Council Member of the College of Palliative Medicine of Sri Lanka and Consultant in General and Geriatric Medicine Dr. Kelum Pelpola[/caption]
End-of-life care can be one of the most deeply emotional experiences anyone can go through. While direct patient care is an important aspect, it is also important to think about the family members around them. This can be a grievous, confusing, and overwhelming time for many family members. Therefore, it is important for us to openly speak and educate the public regarding the challenges they might face and measures to overcome them.
The role of the family member
The family can help their loved one by working closely with the healthcare team to create a holistic plan that accurately reflects their loved one’s preferences. This may include how they would like to be cared for, the level of intervention they are willing to receive, their final resting place, and other relevant details.
Wherever possible, it’s better to start these conversations early to ensure you know what your loved one wants, in the event that they are unable to communicate. It is also a time for providing reassurance and love. Many patients need to know that the contributions they’ve made during their lifetime have had a positive impact on others, and that they are loved and appreciated. This can be done by visiting often, lending a listening ear, providing a comforting touch, and sharing their special memories. Reminding them of the good deeds they have done, such as charitable or meritorious acts, will create calmness and peace of mind.
When a family member is approaching their last few weeks to months of life, it is important to focus on keeping them as comfortable as possible.
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Patients needing palliative care | PHOTOS © Dr. Kelum Pelpola[/caption]
What are the important aspects at each stage?
Depending on various factors such as age, previous mental health, type of disease, and family support available, the end-of-life care plan will be different for each individual. Hence, the important aspects at each of the critical stages are as follows.
When you get to know about the diagnosis
Council Member of the College of Palliative Medicine of Sri Lanka and Consultant in General and Geriatric Medicine Dr. Kelum Pelpola[/caption]
End-of-life care can be one of the most deeply emotional experiences anyone can go through. While direct patient care is an important aspect, it is also important to think about the family members around them. This can be a grievous, confusing, and overwhelming time for many family members. Therefore, it is important for us to openly speak and educate the public regarding the challenges they might face and measures to overcome them.
The role of the family member
The family can help their loved one by working closely with the healthcare team to create a holistic plan that accurately reflects their loved one’s preferences. This may include how they would like to be cared for, the level of intervention they are willing to receive, their final resting place, and other relevant details.
Wherever possible, it’s better to start these conversations early to ensure you know what your loved one wants, in the event that they are unable to communicate. It is also a time for providing reassurance and love. Many patients need to know that the contributions they’ve made during their lifetime have had a positive impact on others, and that they are loved and appreciated. This can be done by visiting often, lending a listening ear, providing a comforting touch, and sharing their special memories. Reminding them of the good deeds they have done, such as charitable or meritorious acts, will create calmness and peace of mind.
When a family member is approaching their last few weeks to months of life, it is important to focus on keeping them as comfortable as possible.
[caption id="attachment_175728" align="alignright" width="353"] Patients needing palliative care | PHOTOS © Dr. Kelum Pelpola[/caption]
What are the important aspects at each stage?
Depending on various factors such as age, previous mental health, type of disease, and family support available, the end-of-life care plan will be different for each individual. Hence, the important aspects at each of the critical stages are as follows.
When you get to know about the diagnosis
- Make sure you get to know as much information as possible regarding the medical condition. This could be done while being with the patient when the diagnosis is explained to them. If this is not possible, it may be worthwhile meeting the doctors sometime after the initial discussion, to clarify matters (this has to be done with the patient’s consent, whenever possible). The following factors are important aspects to know:
- What the medical condition is, is it located in one system of the body, is it something which has spread to other areas (applicable to cancers)?
- How are things likely to pan out in the next few weeks to months?
- What complications are expected during this time?
- Is there any treatment available to keep your loved one comfortable?
- How are drugs administered?
- What should you do if a medical emergency occurs?
- What is the level of treatment suitable for the patient?
- Are further hospital admissions in the patient’s best interest?
- What level of care will be provided in the hospital if the patient is admitted?
- If they have a cardiac arrest, is resuscitation in the patient’s best interest?
- If home care is provided, how can it be provided in an ideal way for the patient?
- There are important symptoms to look out for (pain, agitation, nausea/vomiting, secretions from the throat which can create a rattling sound from the chest)
- What should you do when you see these symptoms? Medication could range from oral tablets to administering subcutaneous or intravenous injections. While family members would be able to administer oral medication, injections would need to be administered by either resident or visiting nurses. However, there may be non-pharmacological methods to manage symptoms such as suction of secretions, changing the position of the patient, etc.
- How to maintain sustenance: Terminally ill patients may not be able to eat or drink. Therefore, intravenous fluids and tube feeding may have to be considered, if appropriate
- Are blood tests and observations required? At times, you may need to know how to operate a digital blood pressure machine, thermometer, blood sugar machine, and saturation probe
- What about medication? Some of the patient’s routine medications are likely to be stopped and only essential medication would need to continue
- How about toileting? Passing urine and faeces may not be possible by going to the toilet at this stage. The patient may be on a long-term catheter to pass urine, and diapers may be required
- How can we minimise the chance of getting bedsores, if they are bed-bound? Using a water or air mattress will help. Furthermore, changing the posture of the patient will be useful
- Is the patient at the correct place? This would be a place previously decided in conjunction with the patient (if able), family, and healthcare professionals. This place could be the patient’s own home or a family member’s home, a care home, a nursing home, or a hospital
- Is the patient comfortable? It is important to look at cues such as a change in facial expressions and groaning as well as agitation and shortness of breath. Every effort needs to be taken to make sure that they are comfortable during this period. In some instances, they may need to be administered some medication to achieve this
- According to patient wishes, are there any religious/spiritual acts to organise?
- Is there anyone among family or friends who needs to be there?