Dying with dignity still remains a dream for most people in the world. Palliative care is slowly becoming the norm for those with life limiting diseases, from the time of diagnosis to beyond.
The care for the patient in the last 48 hours is well within its ambit, but if this short period of patients’ life is neglected, then palliative care cannot claim to be complete.
Advance planning is essential for respecting last wishes
Most people have wishes, and the dying have last wishes. Whether related to the medication or other aspects of care, last wishes should be respected.
These wishes may be conveyed to the healthcare team, by the patients, in the form of living wills or through their caregivers.
These wishes are often non-medical in nature and reflect their connection with family and friends.
Cultural and spiritual diversity is often reflected in these wishes, and fulfilling them is an essential part of holistic care of the patient. It is a fundamental palliative care skill, which needs to be developed.
Caring for the patients in their last few days is challenging and rewarding to both caregivers and doctors.
Fulfilling the last wishes of the patient is the last duty the healthcare team performs for the patient, and for this advance planning is essential.
Understanding culture and spirituality in relation to last wishes
The last few hours are difficult, since it is a journey from the known to the unknown. Understanding of death is culture specific and some cultures insist that death is not the end but merely a passage from one realm to another.
Last wishes are not only about medical care, but often related to spiritual beliefs. Medical issues rarely figure in the end of life phase.
Spirituality is so important then, that it has been considered as a vital sign that must be routinely screened and assessed.
Spiritual needs of patients should be fulfilled in order to provide satisfaction to them and their families. Spiritual support helps the family understand that there are no easy answers to the ‘Why me?’ question.
Researching last wishes
An attempt has been made to enumerate, classify and analyse last wishes expressed by patients encountered by us.
Classification has been done on the basis of probable causes, their legality, feasibility etc. These are essential since they decide whether the wishes can be fulfilled or not.
Often there is a clash between the healthcare providers’ and patients’ assessment of wishes, the ethical dilemma is to decide whose assessment is to prevail.
The possible cause of wishes could be deprivation or craving and some could have cultural roots.
They can also be classified as practical or impractical, legal or illegal etc. Wishes to meet a particular celebrity may or may not be practical, depending upon whether the celebrity has the time or inclination to fulfill it.
Some wishes seem to defy logic, in view of the healthcare providers, since they may not know the significance of the wish in the patients’ lives.
A wish to have alcohol could be problematic since it is illegal in some countries. Tobacco is certainly hazardous to health, but how hazardous could it be for a patient who is dying should be considered while denying or allowing such a wish.
Often patients may express a wish to have a particular soft drink, or holy water while they are on oxygen during their last moments.
Any attempt to provide this would mean interruption of the oxygen supply. There is an additional risk of aspiration that could hasten death.
In such situations the healthcare providers need to have the consent of the relatives, lest they be blamed for hastening death.
Pros and cons of fulfilling last wishes
The pros and cons of fulfilling the wishes should be explained to the family in advance and an attempt should be made to reach a consensus. Some amount of advance planning is therefore essential for fulfilling last wishes.
Many patients wish to die at home, and a survey conducted by our centre revealed that 85% women and 79% men chose home for their demise.
However, in many cases, relatives do not want deaths at home, mainly because they are not confident of handling the patient in the last minutes.
This last wish of patients therefore clashes with the wishes of their relatives; healthcare professionals must decide what is to be done in this situation.
Allowing patients to die in a place of their choice is important, but it needs cooperation of the family. Family agreement can take longer time and can postpone fulfillment of such wishes.
Requests for alcohol or tobacco raise a larger ethical debate. By and large healthcare professionals and caregivers are averse to satisfy such last wishes, since these are harmful substances.
However, the team need to carefully assess the harm they can cause to a dying patient. This is not to say that every such wish should be catered for, but that every centre should have a laid down policy for handling such requests. Every centre managing end of life situations must be geared to handle last wishes.
Adding dignity and creating positive memories
There is no way that a standard operating procedure (SOP) can be laid down for following last wishes. However it is possible to establish an SOP for recording, assessing and building consensus on last wishes.
Some last wishes are going to remain unfulfilled; the healthcare team needs to convince patients and caregivers of the impracticality of such wishes.
Yet there are many wishes, which can be fulfilled and should be; after all this is the last service the care team can do for the patient.
Fulfilling the last wishes becomes all the more important when death takes place in a place not of the patient’s choice.
Dying in an unknown or unfamiliar environment can be dehumanizing, but when patients’ last wishes were fulfilled, there is significant personalization of death.
For patients, this adds dignity to death, while for families it created positive memories of end-of-life care of their loved ones.
Fulfilling last wishes has a knock-on effect on physicians too; it promotes compassion and humanism in practice.
Find out more about The Cipla Palliative Care and Training Centre online.