End-of-Life Care: Hope for the Best; Plan for the Worst

Carefully considering and planning for our mortality can be unpleasant, but it’s an absolute necessity regardless of your age or health status.

Although we’re loath to acknowledge it, death comes in myriad fashions — Sudden. Gradual. Tragic. Peaceful. — but it does come. And when it does, we’re not the only ones who suffer. Our friends, family, co-workers, teammates, and loved ones all share in our anxiety, our pain, and our grief. Yet, while death is unfamiliar territory, that doesn’t mean that we can’t navigate it together.

Mortality is the one thing that we all have in common, even though most of us don’t like to talk about it very much. There’s nothing scarier than the inevitable and the unknown, but it’s important that we plan accordingly, regardless of our age or health status. It’s best to always hope for the best and plan for the worst.

What Is End-of-Life Care?

The phrase “end-of-life care” isn’t limited to those final minutes, hours, or days before a person’s death. It’s a broad term that refers to the holistic treatment of anyone who has been diagnosed with a terminal illness, and it signifies a shift from curative care to palliative care, which seeks to ease pain and suffering and increase the quality of the remainder of the patient’s life. This can be a difficult transition for everyone involved, as daily care measures need to be maintained while also working through overwhelming grief and difficult choices. This form of care requires support from any number of sources, including palliative care physicians, hospice providers, nursing home employees, and home health agents, among others.

When Is End-of-Life Care Appropriate?

It can be difficult to determine when to start considering end-of-life care rather than curative care, and each individual will be different. For some conditions, such as Alzheimer’s Disease, your physician will likely provide you with a rough timeline and general guidelines for understanding and treating the disease over the course of its progression. Other times, the answers might not be as readily available, and signs might not be as observable.

Assess the following issues when considering whether your loved one is in need of palliative care to treat and soothe their terminal illness:

  • Has their quality of life declined?
  • Do they make frequent trips to the emergency room?
  • Have they been frequently admitted to the hospital with recurring symptomology?
  • Are they reluctant to return to the hospital and would rather remain at home?
  • Do they no longer wish to receive curative treatment for their disease?

How Can End-of-Life Care Help?

End-of-life care personnel can help relieve the overwhelming burden of caring for someone with a terminal disease. These professionals are highly trained in this complex and emotional field, and they will do their best to make your loved ones feel comfortable and cared for while also giving you a much needed break and emotional support, should you need it.

  • Practical Care: If your loved one is having difficulty with tasks that were once routine, such as using the bathroom, bathing themselves, or eating, there are services offered through hospice teams or nursing services that can help provide the practical care that they need on a daily basis.
  • Prioritizing Comfort: Once the decision has been made to concentrate on palliative care, the focus shifts toward making the individual as comfortable as possible while respecting their dignity. It’s also important for these measures to be channeled through and supplemented with activities that encourage and foster meaningful connections with loved ones, friends, and peers.
  • Respite: Respite care provides the individual’s primary familial caregiver with relief from the day-to-day stresses of end-of-life care. Whether having a hospice volunteer care for the individual at home one morning each week or admitting the individual for a brief inpatient stay at a hospice facility, this sort of respite care gives the primary caretaker the time they need to focus on their own life while helping their loved one as best they can.
  • Grief Support: Grief is a very powerful emotion that can manifest itself as outright anger, unbearable sadness, numbness, or even relief, which can cause guilt and shame. Bereavement specialists are there to help you and your family throughout this difficult time as you anticipate your loved one’s death and continuing on in their absence.

What Measures Should You Take?

It’s important to establish the individual’s end-of-life care preferences early on so that family members and caregivers alike are clear about how to approach treatment with comfort, dignity, and compassion. Speak candidly with everyone involved to create a transparent plan of action that will benefit the individual and ensure that their wishes are met. It’s their life, and they are entitled to live the remainder of it as they see fit, including through receiving palliative care and having their preferred religious, spiritual, or memorial traditions observed as they approach the end.

Legal and financial considerations should also be carefully examined while the individual is still well enough to participate in these discussions. It might be wise to create a living will, designate power of attorney, and draft an advanced directive that will ensure that the individual’s final time is carried out exactly as they prefer while also minimizing any stress, anxiety, or infighting among the bereaved. If you are unable to prepare any of these documents, you will need to act in accordance with what you feel the individual’s wishes to be. This can be difficult, so take time to write down any memories or conversations that you feel most closely articulate their will regarding these difficult end-of-life decisions.

You and your family should designate a primary decision maker to handle all relevant information and help facilitate and coordinate family involvement. Family conflicts are common when relatives are diagnosed with terminal diseases or illnesses, and this decision maker should be the one to make the tough choices on behalf of the indisposed, regardless of outside influence or personal gain. One of these choices will involve whether to institute end-of-life care, to what degree, and through what measures.