Many of us are very familiar with Hospice and how they care for folks and their families. Some have heard others describe what they considered Hospice bringing on the death of their loved one by the use of morphine. Many are afraid to enter Hospice as a result until there are no other options. This article will describe the benefits of Hospice care and how the care they provide can ease suffering by tight symptom management and one-on-one visits as well as family meetings and other supportive care. Additionally, we will look at how an end-of-life doula, or death doula, can be an additional support to the dying person and their care circle.
When a patient decides on Hospice care they are usually asked to sign a Do Not Resuscitate order known as a DNR. Once someone is assigned into Hospice care, the idea is to accept comfort measures only, not treatment or cure.
An individual does not have to be actively dying (days to hours before death) before entering Hospice service. Actually, once one has been given six months or less to live, Hospice care is available. Oftentimes the extra care by Hospice, such as visits by social workers, chaplains, health care aides, receiving baths, a hospital bed, commode, and other equipment, can make a person much more comfortable for the remainder of their life. The beauty of this type of Hospice care is that the person will be able to do the work of wrapping up their life in the form of life review, contacting others to say the things they feel compelled to say, begin saying goodbyes, and come up with a plan for a funeral and disposition of possessions, etc.
It is also during this time, while symptoms are being well managed, that the family can determine a healthcare proxy and final wishes as far as medical interventions (if not already completed). The person, along with their family, can also make sure the finances are in order, complete an updated will if needed, and make sure all accounts and passwords are known by the designated power of attorney or executor of the estate.
Oftentimes people wait until they can’t take the pain any longer or have declined to the point of no longer being able to communicate, and that creates stress, worry, confusion, and potential problems if there isn’t someone who can carry out the person’s wishes. This can be traumatic. A patient with unremitting pain, shortness of breath (SOB), or suffering from the challenging and uncomfortable symptoms that come with many disease states, will not likely have a peaceful death. President Jimmy Carter entered Hospice (which means he was given a 6-month expected life span) and lasted over a year before he died recently. This was likely due to Hospice intervention and the loving care of family.
If a Hospice patient remains well enough past the traditional six-month mark, they can be signed out of Hospice and then reenter once they decline to the point of needing that care again. Sure, it may take a few extra signatures, but it can be done. The patient does not “lose” Hospice. They are signed out of Hospice and must restart the entrance process.
Some disease states can be pretty scary, with high pain levels or shortness of breath, and families may want to call 911. This may create a cascade of medical interventions and procedures the dying person did not want. When one is receiving Hospice care, in this case, the best option is to contact the Hospice provider so that they can attend to symptom control and management.
Medicare typically pays for Hospice care 100%. The Hospice nurses, chaplains, social workers, health care aides, volunteers, and even service animals can visit folks in their care home, the skilled nursing facility and/or family care home, as well as in the hospital under certain conditions.
Personally, I believe it’s time for Hospice if symptoms are tough to be managed at home without supportive nursing care, or if a family member is doing all the care on top of working a job, caring for their self and possibly other family members. Before exhaustion sets in, Hospice can be providing their resources and care.
Keep in mind that a Hospice nurse visits 1-3 times a week or for about an hour on average and depending on the policies of a particular Hospice. Hospice is also a phone call away 24/7. The bulk of the care will reside with the primary caregiver or the care home staff.
How Can a Death Doula Help Our Family if We Already have Hospice Care?
A death doula can be helpful for those gaps in visits by Hospice. We do not compete with Hospice but augment their wonderful care. Death doulas are considered non-medical and as such provide emotional, spiritual, and physical support. Most doulas have been trained to recognize symptoms and can alert the family or Hospice so that interventions can be provided for the patient’s comfort.
Doulas who help folks at their end of life can support the dying person and/or the family as they encounter the emotions of being with someone at their end of life as well as empower the dying person to speak their wishes relating to pain level, decide who will provide their day-to-day care, and where the care will be provided. Doulas advocate for a person by attending doctor appointments, being an extra set of ears and taking notes for the family. Beyond this, some doulas will run errands, be a companion, help with funeral arrangements, etc. Death doulas are typically not funeral directors but are aware of funeral homes and alternative burial services in their area so that they can guide a family who may not otherwise know where to turn.
Overall, a doula can be a quiet, gentle listener at a time when emotions run high and decisions need to be made. A doula can be a calming presence, encourage family meetings and provide supportive care. This is not intended to replace Hospice but to be a valuable resource when death is near.
When you realize someone in your life is nearing their end of life, whether a physician has told the person there are no further treatment options or they have been given a terminal diagnosis or six months or less remaining in their life, consider contacting Hospice as early as possible to begin receiving their wonderful and thoughtful care. Before that time, as a loved one ages, consider contacting a death doula to holistically support the entire family according to specific needs or concerns. Ask your local hospital if they have doulas on staff, contact Hospice to ask whether they have any on staff or contact information for a doula, or look online. There are many directories and collectives with doula names and contact information all over the country and the world.
Contact me if you want to learn more: [email protected]