Helping your loved one at the end of life
Jason Samson
Director, Eastern Counties
Jason Samson, Director of Carefor Eastern Counties and former manager of Carefor Hospice Cornwall, talks about what people need to know as they support a loved one through the end of their lives.
Time seems to freeze when you learn that someone you love has been deemed palliative. Some will instinctively push the news away. Others will cry, or swing into action. No matter what happens on that day, time and life continues regardless of whether you feel ready to cope.
You and your loved one may have pursued promising treatments and perhaps enjoyed a period of remission from the encroaching illness. At some point, however, further treatments are no longer an option. This is when not only the loved one, but also the primary caregiver, needs support.
Some of the support you need is emotional. The fears and feelings that surface now are better aired than ignored. Some of the support you need concerns practical details. End-of-life care needs to be arranged and funeral plans need to be considered.
Most will need to recognize and deal with anticipatory grief, a grief felt when someone you care about is seriously ill. It is a feeling you will grapple with as you grieve a loss before it completely unfolds.
Depending on the type of illness and the relationship you share, you may feel closer and more determined to make the time you have left count. Perhaps you are terribly anxious about what’s to come or so firmly focused on last-resort treatments that you continue to push away any thoughts of the end. Possibly you long for release or feel guilty and conflicted. In many instances a Social Worker can be of great assistance often recommending that you speak with sympathetic friends or family members, especially those who have weathered similar situations. Joining a support group online or in person and reading recommended books designed for caregivers.
Making time to say goodbye is important. Talking about death is difficult. You may worry that you’ll undercut your loved one’s will to continue or overwhelm them in fear. Speaking about death is not a form of abandonment and it’s normal if your own anxiety, sadness, and discomfort makes your words choke in your throat.
The more important practical aspect of end-of-life planning touches on having a Power of Attorney in place for Personal Care as well as ensuring a signed “Do Not Resuscitate” directive is in place.
Few of us wish to think about these matters at difficult times. But it’s easier to consider many of these issues before they become pressing.
A Power of Attorney for Personal Care helps ensure that a person’s health care wishes and end-of-life concerns are known and respected. This document addresses how aggressively doctors should pursue life-sustaining measures and when quality of life or comfort measures should be paramount in the care provided. The document designates who can speak on your loved one’s behalf and sets forth medical wishes that will guide health care decisions when your loved one becomes unable to make decisions.
Your loved one will need to inform family members. Discuss his/her wishes for end-of-life medical care. This is a difficult topic and it may help to begin by speaking about a recent case in the news or the treatment of someone you know. It is important to repeat periodically. Have discussions with family and medical staff more than once to be sure wishes are understood. This is especially important as circumstances change.
A do-not-resuscitate order (DNR) informs health care professionals not to attempt cardiopulmonary resuscitation (CPR) if the person’s heart stops beating. This document is written only when these measures are unlikely to revive a dying person or to prolong meaningful life. Generally, during the last stage of a terminal illness, CPR is not very likely to result in successful resuscitation.
It’s very important to discuss the need for a DNR with your loved one and his/her physician. Understand that medical care will still be available your loved one will continue to receive appropriate medical care to treat short-term illnesses or injuries and relieve pain or other troubling symptoms.
It’s worth noting that health care and emergency personnel are required to attempt CPR if there is no DNR, even if the patient has asked family members to request that they forgo this measure.
Keep the original DNR handy. Generally, only originals are valid, so it’s wise to have several originals of a DNR form. Always keep one original handy in the person’s home; the other should be carried by the patient or a caregiver at all times.
Consider the options of receiving Hospice care. Hospice care is a practice, which encompasses physical, emotional, and spiritual needs. It may take place at home, at a nursing home, an assisted living center, or a Hospice residence. When a cure is not possible and aggressive treatment isn’t desired, hospice care offers symptom relief, pain control, and a great deal of support.
The hospice team works with the families and their loved one to develop a personal plan of care. Family, partners, and close friends may be invited to help in many ways, such as by assisting with daily tasks like feeding and bathing and offering comfort by reading, sharing music, holding hands, and simply being present.
Hospice programs vary greatly but generally share similar characteristics in the range of offered services. Hospice staff can administer pain medications, provide nursing care, and offer emotional support. Before and after a death, emotional support is extended to caregivers. Many programs offer bereavement counseling up to a year after a death.
The hospice team is multidisciplinary including specially trained doctors, nurses, personal support workers, social workers, people who offer spiritual care, and volunteers.
It is wise to investigate hospice programs well in advance, as there may be a waiting list for some facilities. Consider what will be expected of you and whether the hospice’s philosophy of care—including use of antibiotics, resuscitation, and hydration—matches that of your loved one and other family members. And ask about support programs for caregivers and availability of inpatient services.
For more information about Carefor Hospice Cornwall, please visit: https://cornwallhospice.com/.