I am writing no less than 45 days after my mother died from a GI bleed from ovarian cancer. Not once did my mother’s team of doctors mention palliative care. It was not until days and even hours before her death that hospice was discussed and implemented. Our family was blindsided by this.
While no one likes to talk about the topic of death, it is important to remember that this is a natural cycle of life. Doctors are always on the cutting edge of medicine and talking about the possibility of death seems like failure. In reality not talking about the services available to family is the ultimate failure.
Here are the top 5 reasons why:
1. Pain. Patients may get to a point where pain is not manageable with the regular visits to the office. To know that there are potential solutions from a team that understands the full situation and can target medicine toward avoiding suffering is key. It can make a huge difference in quality of life and the person’s overall attitude toward the options available. It puts the patient in the driver’s seat.
2. Quality of life. Running from doctor to doctor, balancing prescriptions at the pharmacy and not tending to one’s overall quality of life can be draining. If more attention were paid by doctors to palliative care during serious illness the patient would feel a sense of relief that there is a friend on the sidelines ready to work with the entire team to manage symptoms and if need be start discussing hospice.
3. Hospice gives the patient comfort at a time of great stress. Hospice should not be a last-minute option. It should be done with great thought and care with the patient’s needs in mind at all times. To be able to stop all treatments and procedures and focus on the remaining days ahead without pain and suffering is often a relief.
4. Families are grateful for palliative care and for hospice. The patient’s families are often in the dark about these services. Their stress on trying to do the best for their family member is truly overwhelming because they worry about what they can do to help. Knowing that these services are there is half of the battle. Even if they are not going to be needed in all likelihood, families deserve the right to know about them.
5. Dignity. While we are so busy “fixing” the patient we should also look to giving that person a sense of dignity. No one wants to suffer in death. Patients want the ability to have time with their family members and to peacefully convey last words and more.
Consider creating a simple sheet describing palliative care and hospice and handing it out to patients as they start treatment for a life-threatening illness. Make it clear that you plan to do all that you can to help them but in that same vein you also want them to be completely informed of their rights to extra services should the illness become complicated. More often than not, you will find patients and their families grateful for the “road map” for their full treatment, successful or not. It is the ultimate gift.
Deb Discenza is co-author of The Preemie Parent’s Survival Guide to the NICU and the founder and former publisher of Preemie Magazine.
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