Palliative Care needs of older persons at home (including End-of-Life Care)
– Dr. Stanley C Macaden, Bengaluru
Let’s begin with a short case summary: Mr. Raju (name changed), was 80 and a known case of Diabetes, Hypertension and Chronic Obstructive Pulmonary Disease (COPD). He had good family support and was under the care of a Geriatrician for the past several years. His progressive weakness and his three admissions within a six month window, prompted his Geriatrician to refer him for home based palliative care. Post initial assessment and management, the palliative care team rendered care via monthly home visits. The visiting team had made it possible for Mr. Raju to consult with his Geriatrician, if needed.
The primary objective of these home visits was to achieve an acceptable quality of life for Mr. Raju by creating a combination of good symptom control, effective communication, implementing advance care planning and by nurturing a relationship of trust.
While caring for Mr. Raju, his family was also provided with the appropriate emotional and spiritual support they required. The family along with the paid caregiver, were trained and empowered to care for Mr. Raju. Despite Mr. Raju’s steady deterioration which subsequently made him bedbound, Mr. Raju’s family honoured his advance directives for no further hospital admissions. In what was the last visit, the palliative care team recognized that Mr. Raju was nearing his end as he was mostly restless, was unable to swallow his medication and was drowsy most of the time. The team then explained to the family, Mr. Raju’s critical condition and helped them to spend their remaining time together. The team also explained the need for a subcutaneous route and taught them its administration and management, while assuring them of online support, if needed. The family was fully involved and ensured that Mr. Raju was comfortable. Mr. Raju eventually passed away peacefully, while being surrounded by his family and friends.
Mr Raju’s story depicts how appropriate, wholistic and integrated care can result in ‘a good death at home for an older person’.
Let us elaborate on this approach.
To begin with, it is imperative for Geriatricians’ or the treating physicians’ to identify older persons under their care who are approaching the end of life. The Gold Standards Framework (GSF) of 1. Surprise Question, 2. General Indicators of decline and increasing needs and 3. Specific Clinical Indicators related to 3 trajectories, aim to guide the geriatricians’ or the treating physicians’ in this regard. This will facilitate early referrals for palliative care.
At the time of referral, a comprehensive geriatric assessment is done; ideally along with the geriatrician, in a combined clinic (if possible). This helps identify the ‘areas of concern’ for the ‘geriatric giants’, who need to be managed. The most common ‘areas of concern’ tend to hover over intellectual impairment, instability, immobility, incontinence, iatrogenic disorders, and isolation. These ‘geriatric giants’ are then offered to be followed by via home visits.
During the first home visit, the main ‘areas of concern’ are reviewed once again to help identify and address the patients’ palliative care needs.
Listed below are a few of the most common ‘areas of concern’ and palliative care needs to look out for during home based palliative visits, along with a few pointers to effectively address them.
- Person being incapacitated by difficult symptoms: Provide good symptom control while focusing mainly on pain, breathlessness, weakness, insomnia, poor appetite, and constipation.
- Reduced functional capacity: Alter the patient’s lifestyle to cope with their limited energy and suggest measures to prevent falls.
- Multi-comorbidity: Transition from a ‘disease management approach’ to an approach of ‘providing comfort care’. If needed, interact with Geriatricians’ or Physicians’ to deliver quality care for complex issues.
- Frailty (physical and / or cognitive): Suggest measures to prevent falls taking into consideration all safety issues.
- Poor family support and / or abuse: Encourage the family and the community to be involved in the patient’s care and well-being, and put in place measures to prevent abuse.
- Poverty: Guide, connect and empower the family to tap into the various community and government resources. Try to create an environment where the community is sensitive to others’ needs.
- Loneliness: Encourage the patient’s family, friends, and community to be actively involved with the patient. Suggest ‘phone visits’ and offer spiritual support to patient’s, if need be.
- Family caregiver support: Network, assist and organize for the family to receive respite care through community support.
- Advance Care Planning (ACP’s): Educate families and thereafter implement ACP’s as a tool to help families cope with a constantly evolving situation, and help respect the patient’s wishes.
- Dying person: Recognize when patients’ are nearing death or are dying, and empower families to manage this phase at home. It is important to also facilitate the process of death verification and certification.
- Bereavement support: Anticipate abnormal grief and offer support to the bereaved families.
Additionally, it is critical to encourage families to have frank communications, educate families to avoid force feeding and monitor bowel movement, manage infections with oral antibiotics, provide gentle passive physio and allow for the family to spend time with the patient. It is also important to regularly review medications and discontinue those not necessary. Continuing interactions with the patient’s geriatrician or their treating physician is helpful for providing quality care. Clinical judgment and building a relationship of trust is therefore paramount while delivering home based palliative care.
Finally, it is important to recognize when patient is dying so as to provide additional wholistic support to the family and empower them with the use of the subcutaneous route to keep their loved one comfortable at home. This can be easily achieved by the simple and effective method of an intermittent regular, 4 hourly and prn subcutaneous injections of a combination of medicines in a 10ml syringe and a 23-gauge butterfly needle and cannula. Families must be taught to administer 1ml of this combination 4 hourly and prn, and thus are fortified with 6 regular doses and 4 prn doses for 24 hours. This is therefore called as the ‘Family Driver’ method, in honour of those families who are willing to provide this critical care.
The absolute need for the widespread integration of palliative and geriatric care and the provisioning of palliative home care along with empowered families cannot be stressed enough, if we want to relive the suffering of older persons and create an opportunity for them to die at home, peacefully.
About the Author: Dr. Stanley C. Macaden is a honorary and a senior palliative care Consultant at Bangalore Baptist Hospital and the Christian Medical Association of India.