This is going to be largely an opinion post as a follow-up to the previous one about palliation. Clearly palliation has a place and it works just as hospice and EOL care does. This cannot be disputed. And there are benefits for both patient and caregiver when this care is implemented.
Yesterday during a group session we were talking about palliation and pain management. We were discussing that at times in either nursing homes, at home, or hospitals patients with terminal illness may not be receiving proper pain management. A person familiar with that commented that there are cases that we’ve all seen, where the patient is in abject agony and they are waiting for their next administration of pain meds, which comes but never gets ahead of the pain. Or the family feels that having the patient overly sedated is not fair to them. And there is always the fact the attending may not be up to speed on pain management etc. These are all problems that can be solved with education learning etc. We have to work toward fixing these issues.
What struck me was how my experience with Donna and her time in hospice etc. was different from some others that I’ve spoken with. Make no mistake about it hospice is horrific for everyone involved. It is not the Four Seasons but it meets a critical need. It serves a purpose and achieves its goal for the patient and the family/caregiver.
“Psychosocial adjustment that raises patient quality of life is also dependent on the relief of burdens and the strengthening of important relationships prior to death (Singer et al. 1999). Patients often have great concern that they are being a burden to their family and their caregivers (Steinhauser ct al. 2000a). Improving communication between patient and family and patient and healthcare professionals could do much to relieve the burden that terminal illness may bring and strengthen the relationships that arc necessary to raise the level of quality of life at the end of life. Raising quality of 11% and quality of death maximizes the patient’s opportunity to experience a good death.”
Beyond the patient’s care and comfort we must consider those left behind. Those who carry the burden of watching and caring for a loved one during illness and at end of life. The time following a passing is as important as the time spend in health. It should be spent in positive memories during healthier times. Time following a death should be spent sorting out what was and wasn’t in the relationship and how to create a tapestry of that love that will stay with us for our lifetime.
I know for me with the positive experience I had with palliation and hospice it still took me months not to have the images in my head of Donna wasting in hospice. But they have been largely replaced by our life together. This begs the question, for those loved ones left behind who may not have benefited from palliative care or hospice, what are their lasting images and impressions? Do they question why they were not offered palliative care or offered it late or choose not to implement it? Do they spend their time post death sorting out what happened in the last few weeks and not what they had during a lifetime? Are those family members and caregivers, who did not benefit from palliation, do they have higher rates of depression? Do they suffer greater incidence of complicated grief when compared to caregivers who were part of a palliative care process?
Palliative care is a gift. It is a gift from the healthcare community and the person who passed away. It is a gift for both the living and the dying.