Navigating End-of-Life: Palliative & Hospice Care at Home
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One amazing truth we share with every other living creature is the inevitability that we will all die. Yet we don’t really think so. We live like dying is something that happens to others. That is, until, like an avalanche, it makes its presence known.

The how and when we will die is a great mystery, so planning seems to be a bit unnecessary. Understanding how the medical community views end-of-life care can save you time and stress when faced with this situation. It can also be enriching to understand that death is not just a medical event.

The majority of people die in hospitals without ever having a conversation about the dying process. Treatments and procedures ensure that everything has been done to save a person, even though it is unlikely that there is a cure. Many people sacrifice quality of life for the hope that the next procedure will be a saving grace.

Doctors increasingly understand that they need to bring up the dying conversation sooner in a person’s treatment plan. It is a difficult thing for a person to do whose sole job is dedicated to keeping people alive. However, many are waking up to the realization that patients need to know what options are available to them if they are faced with a terminally ill diagnosis.

Taking a breath and being willing to think about this subject is profound and challenging for all of us. When we take the time to do it though, it is surprising that we often know what is needed and wanted. We know what matters. Ultimately, contemplating one’s own death is an opportunity not only to transform feelings about dying but to enhance how we live.

Given the vast scope of this subject, this piece will lightly sketch out and make some distinctions around the difference between palliative and hospice care, what hospice care is like in the home, and how to care and comfort one who is dying. While this is a huge subject that has many facets and subtleties to be fully addressed, the goal is to provide a gentle start.

What is the Difference Between Palliative Care and Hospice Care?

Both palliative and hospice care rely on a team model of care for people with serious illness.

Palliative care is symptom-focused care for people with a serious illness, no matter the prognosis. The goal of palliative care is to reduce symptoms and emotional distress as a person faces serious and potentially life-threatening illness. Hospice care is a subset of palliative care that is offered when it is clear that a patient has a prognosis of six months or less to live.

For example, if a woman is diagnosed with cancer and is going through the prescribed treatment, she many have surgery and undergo chemotherapy and/or radiation treatments.

Palliative care specialists will come in and help her deal with the side effects she may be having from these treatments. Pain management from surgery and how to navigate treatments and their side effects is the primary focus of palliative care. It can also utilize support from social workers for planning and emotional support. This same woman responds well to her treatment and after a time is deemed cancer free.

If, on the other hand, it becomes clear that a patient is not responding to treatment and the illness is advancing with little hope for remission or cure, a physician will have a conversation with the person about hospice. This can occur at any time when the physician is clear that the disease is progressing. Unfortunately, this occurs very late in a patient’s illness and many of the potential benefits of hospice care are not utilized.

Hospice care is for people who are in the last six months of life and still need that multidisciplinary approach to care. They may need a physician who can help with medications for pain and a nurse who can provide care specific to their condition. Social workers can moderate family meetings and formulate a roadmap of care for their loved one. Spiritual support, in the form of chaplaincy, can also be provided if that is wanted.

For many, the conversation that surrounds end of life care tends to come up only weeks, days, or hours before a loved one dies. While one may enter hospice with the understanding that they are “dying”, the level of attention and care that is provided increases the quality of life for the patient.

It benefits everyone to think loosely about what they want when it comes to medical treatment, emergency intervention, where they want to die, and who they want to care for them, when they are well and able to have this discussion. In other words, let those close to you know your wishes should you not be able to communicate them when they really need to know.

What to Expect with Hospice Care at Home

Hospice service can be provided at home or in a hospice facility that is dedicated to end of life care and comfort. Statistically, the majority of us will die in a hospital. Studies have been done in Japan that show that terminally ill cancer patients who chose to die at home lived significantly longer that those who remained in the hospital. Being at home, you are in the place where you are most comfortable and familiar. Being able to be at home provides a peace of mind that tends to the heart of the dying one.

Once it becomes clear to a physician that the disease is incurable and the patient will most probably die within six months, hospice care is offered. A team of caregivers shows up. This quickly becomes an intimate process between the patient, the family, and the caregivers. All are aware of how tender the days ahead will be for the patient and her family. When working with a patient receiving hospice, caregivers hold true to providing the fundamental the principles of hospice care:

  • Comfort
  • Dignity and respect
  • Quality of life
  • Humanness to the dying process
  • Being supportive of family

The caregivers tend to consist of a physician, a registered nurse, a CNA, a social worker, and if desired a chaplain. Also, in this troop of care, some hospice organizations train volunteers to come to a patient’s home and support them and the family members through these last days.

Hospice at home takes the emergency out of dying. It is a time when one is supported and cared for to whatever degree is necessary. Hospice caregivers not only deal with the realities of providing the best possible physical care, they care for the individual and help insure that the family caregivers are supported.

How Home Care Agencies Support Hospice Patients

One very important issue to be aware of is that hospice caregivers do not provide around-clock-service. In general, hospice nurses and caregivers are only in the home for a few hours during the week.

Many families find themselves surprised by this fact. Including an additional home care plan in the overall care setup is crucial.

Apart from the hospice agency itself, other agencies are available to support the family in caring for their loved one. Fill any gaps in care by having a home care agency with work the hospice agency. If necessary, these agencies can even provide 24/7 care. Fundamental to these home care concierge services is the intention to provide compassionate one-on-one care at home to the dying.

Here are some of the services that a home caregiver is able to provide:

  • Keeping the individual comfortable
  • Attending to and turning the bedridden to prevent bed sores
  • Assisting with personal care like bathing a grooming
  • Providing compassionate companionship
  • Preparing meals based on the client’s needs and preferences
  • Helping clients maintain their personal hygiene
  • Providing emotional support and help mediate depression
  • Communicating status updates with the hospice agency or workers and relaying this information with the family
  • Supporting and providing resources to the family after their loved one passes

When it comes to hospice care at home it can be overwhelming, but know that hospice and necessary home care service agencies exist to make this challenging time manageable.

How to Provide Comfort and Care at End-of-Life

This is a vast subject with an ever-growing pool of knowledge to study. Frank Ostaseski’s book The Five Invitations: Discovering What Death Can Teach Us About Living Fully is a gem if you want to engage this subject more fully.

Providing comfort at the end of life is poignant work. While much of the care that is needed is practical and seemingly routine, dying is much more than a medical event. It is not necessarily an emergency or a tragedy.

Most of us will wait until the end of our lives to think about death. We don’t contemplate our wishes or who we want to have caring for us until, in many cases, it is far too late. This leaves us reacting to the illness instead of engaging in it in a way that could provide increased comfort and care to the dying one.

For the dying, having a caregiver present who does not consider this process an emergency is often a calming balm that reduces fear and anxiety. It really is possible to be present in a way that is calming and provides a peaceful loving presence for the one dying and for those who love him or her.

Finding Support During End-of-Life Care

For those family members who care for a dying person, there are organizations that provide training in caregiving. These programs help the caregiver avoid burnout and learn tangible techniques in self-care so that they are able to effectively care for their loved one. One such organization is Zen Caregiving Project out of San Francisco that provides trainings in various locations.

Learn more about how Home Care Assistance can support caregivers and those in hospice or palliative care here.

Resources

Frank Ostaseski, The Five Invitations, Discovering What Death Can Teach Us About Living Fully

Advances in Hospice and Palliative Care in Japan: A Review Paper Masanori Mori, M.D. and Tatsuya Morita, M.D.*

Zen Caregiving Project

About the Author(s)

As a Volunteer Caregiver to the Zen Hospice Project and a Course Manager at the CareGivers Project, Audrey Meinertzhagen is passionate about improving the standards of care for older adults and educating caregivers on the principles of mindfulness and self-care.

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