Family members have many expectations from palliative care providers given the support they receive through the tough illness times of their loved ones.
Kisii Level 5 Palliative Care Center nurse Mrs. Mary Lwanga says that at times, expectations of relatives and friends supersede the ability of caregivers, yet it is the role of palliative caregivers to offer bereavement support to relatives once their sick patient passes on.
She says that once a patient has passed on, some relatives will call to ask for a contribution towards burial expenses.
This, Mrs. Lwanga says, come along with huge hospital bills, which the patient might have incurred while undertaking expensive medication or therapy like chemo or radio.
“We sometimes have to part with the little that we have so that they can feel our care at this difficult time as it is our mandate to offer comfort and support until they are through with the situation at hand.” She says.
She says they try to exempt their patients’ drug expenses where they can but there is a limit to this, as too many exemptions will raise issues with the hospital management.
“This exemption helps in reducing the bills but we still have to find a means of trying to cushion their expenses once they depart from us.” Mrs. Lwanga says.
She adds that some patients, once diagnosed, run away from the unit and go seeking for help from various individuals whom once they discover cannot help, return back with their condition deteriorated.
This, she says, increases the stress levels among family members, a situation they have to deal with once the patient returns to the unit.
She adds that it is their wish to see patients who are at home but the hospital has not dedicated a vehicle for such home visits.
“Sometimes you feel you should see them especially when the patients need us by their side. Though we try our best to be there, sometimes it goes beyond our capability leaving us with no choice other than to just talk over the phone in an effort to the give the desired comfort.” She says.
Kenya Hospices and Palliative Care Association (KEHPCA)’s programs officer Mr. David Musyoki says the government has not done much in palliative care home visits, as this is a mandate usually attached to hospices.
“This is a dilemma for palliative care units that have no hospice forcing such units to do their best in conducting home visits though this is quite challenging as patients end up missing on the end of life support that palliative care is mandated to provide.” Mr. Musyoki says.
Felistus Kombo, a palliative care nurse at the same facility says during bereavement, they are faced with yet another cultural challenge.
“During burial, married daughters from the family are not given quality time to grieve the departed loved once.” She says.
She says that these family members are asked to leave soon after burial for they are not supposed to stay home any longer.
Mrs. Mary Lwanga says that such cultural beliefs deny relatives the freedom to mourn their departed colleagues fully, a situation that may leave them depressed.
“One is supposed to be given time to mourn their loved ones as desired so that they can do away with the grief.” She adds
Mrs. Lwanga says the family is supposed to be close to shade off the pain of grief together with the help of palliative care providers.
She says that they cannot interfere with culture but they try to educate the family members that bereavement does not end at burial but is a continuous process even after the burial ceremony.