You’ve been asked to take a terminally ill loved one home. Are you ready for this? Dr. R. Akhileswaran, Medical Director, HCA Hospice Care, Singapore tells you how to make the last days as comfortable as possible in this interview with PatientsEngage.
Plus, talking about death and other questions we are too afraid to ask.
1. Patients in their last stage of life are often advised by doctors to take the patient home but family members are often afraid to do so. What is your advice? (Please speak from your experience in Singapore and India as many of our readers are based in India. As I understand, in India, family members often fear the risk of infection at home and also inadequately trained nursing staff.)
Surveys done in different parts of the world have shown that patients want to spend the final days of their lives in their own homes. This is usually possible if:
a. If the patient's family is willing and capable of looking after the patient at home.
b. If there is a home hospice service or similar home care service available and family caregivers can be trained to take care of the patient at home, this is definitely possible.
c. Risk of infection is not really an issue as the patient will not be discharged from the hospital or advised to be taken home if the patient had an infectious disease.
d. With the support of nurses, doctors and medical social workers, family members can be taught to take care of patients at home.
2. With a terminally ill patient at home, what are the things that family members should be prepared for? What do they need to put in place before they take the patient home?
Before the patient is transferred to his/her own home, the following things must be in place:
a. A family member or any other caregiver who is trained in taking care of the basic nursing needs of the patient at home, i.e., toileting, feeding, etc, must be available at home for round-the-clock care of the patient.
b. The required medical equipment depending on the needs of the patient i.e., hospital bed, commode, wheelchair, oxygen concentrator (if needed) etc. must be ready at home.
c. The family members must be able to cope emotionally with the care of the patient at home and ready to face the eventuality of the patient passing away at home.
3. In many countries now, doctors do not make home visits. Is this a concern? How does one deal with this?
Seeking the help of a General Practitioner who has a clinic in the neighborhood who can make home visits if needed, should be tried. It is always good to have a known or a neighborhood doctor willing to do home visits when required for the patient if a home hospice or home care service is not available.
4. Should one be honest with a patient who does not have long to live and tell them everything about their condition? What is the best way to go about this?
It is always good to tell the patient the truth so that he/she can take care of any unfinished business that they may have. It also prevents a conspiracy of silence in the home around the patient. Breaking bad news is a science as well as an art and only those trained in doing so should do this so that it is done in the right manner. This will help the patient sustain realistic hope.
5. What kind of at-home support can a family expect from home hospice care in Singapore, where often both adults are working?
The frequency of the home hospice team's visits by doctors, nurses, psychosocial staff (medical social workers or counsellors) and even volunteers in Singapore depends on the needs of the patient and the family members. The team is able to train domestic helpers who are the main caregivers for the patients if the family members are working.
They also keep the family members informed of the patient's condition and on what to expect so that the family understands the patient's condition and is prepared for it.
6. Pros and cons of home hospice care vs hospice care v/s hospital stay for terminally ill patients. Are there some cases where you would not recommend home hospice care?
The place of care for the patient i.e., patient's home or residential hospice or hospital depends on whether the patient's symptoms like pain, breathlessness etc. are controlled or not. It also depends on whether the family caregivers are able to cope with the physical care of the patient at home and also cope emotionally with the eventuality of the patient dying at home. If the patient has uncontrolled symptoms or the family is unable to cope with the patient's care at home, then the patient will have to be placed in a residential hospice or hospital.
7. What do you say to family members who are grieving the condition of a loved one? How do they keep strong?
Grief may be anticipatory in nature, i.e., the family members may start grieving before the loved one passes on or may have a difficult bereavement period after the patient passes on. In both of these circumstances, the home hospice team or a grief counsellor will be able to provide the necessary support for the family members so that they are able to accept the reality and cope with it.
8. Often there is one primary family carer. How can he or she involve other members of the family and even friends?
If the primary caregiver is a family member, it is essential that other family members or friends help share in the caring of the patient at home, to prevent the primary caregiver from fatigue or burn out. This can only be done through understanding the needs of the patient and how the responsibilities can be shared among the different members who are willing to help.
9. Why did you choose to work in palliative care?
Palliative care is a very meaningful field to work in as it helps patients and their family members during a very challenging time in their lives. Helping patients with life limiting illnesses live well until they die not only gives them a "good death" but also helps their loved ones to continue living well. This work is all about building good relationships with the patient's best interests at heart and in the process everyone involved becomes a better human being. This is what I have experienced and I think palliative care chose me and not the other way around.
