Nurse holding senior mans hand at end of life.

End of Life Care at Home: What Hospice Doesn’t Tell You

Losing a loved one is one of the most challenging experiences we face in life. When the time comes to manage end-of-life care, navigating the complexities of palliative care and hospice services can be overwhelming. 

While these terms alone can often bring about unsettling feelings, it is important to know that they are valuable and can help the entire family through a life-limiting disease through end of life. As you prepare for the transition, one of the biggest decisions is whether your loved one moves to a facility or stays at home.

While hospice care at a facility is the default for many families and provides high-quality care, it may not bring the same level of convenience, reassurance, nor attention to detail as nurses in a peaceful home environment.

Let’s explore the difference between hospice and palliative care, the benefits of these programs, and how in-home nursing can help you navigate this sensitive time with clarity and confidence.

Hospice Vs. Palliative Care: What’s the Difference?

Both palliative care and hospice care share the common goal of providing comfort and support to individuals with serious illnesses, but there are key differences between the two.

  • Palliative care is available at any stage of a serious illness and focuses on improving quality of life through symptom management and emotional support. 
  • Hospice care, on the other hand, is specifically designed for individuals nearing the end of life and provides comprehensive support for both the patient and their family.

Hospice & Palliative Care Aren’t Set In Stone 

These programs are meant to help people and their families when someone has a life-limiting illness (palliative care), or when someone is thought to have six months or less to live. 

Sometimes people can stay on these services for years, and that is wonderful! It means that they are getting more care, more frequently, and the care comes to them and their loved ones. 

It can help begin to take some of the burden off the family and help start important discussions about end-of-life wishes. The goal is always to begin receiving support as soon as possible.

You Are Always in Charge

No decision is final. If you choose to start with palliative support or hospice, you can always say you don’t want it anymore. It’s important to just think of them as benefits that you qualify for and should have access to. It can help both you and your loved ones financially, physically, emotionally, and spiritually.

When it comes to end-of-life care, you have the right to choose the services that best meet your needs and preferences. Whether you opt for palliative care or hospice care, it’s essential to communicate your wishes with your healthcare provider and loved ones. 

If you have a nurse advocate, they are in the prime position to help make this happen and to ensure clarity of all conversations. A personal private duty nurse advocate who is unbiased within the system can help you understand your options, which will empower you and your family to make informed decisions. 

End-of-Life Care Availability Isn’t 24/7

While palliative care and hospice services provide essential support, it’s crucial to understand that they are not available around the clock. Knowing this can help you plan for additional support during times when these services may not be accessible. 

Services can increase as you or your loved one’s needs increase, but it still may not be enough, and you may be left feeling overwhelmed, scared, and alone. 

Opting for in-home palliative care or hospice, where your family can set a clear schedule and easily adapt it over time, may help bridge the care gaps and bring the peace of mind you seek.

Your Care Team May Change

First of all, palliative care and hospice services involve a multidisciplinary team of healthcare professionals, including doctors, nurses, social workers, and chaplains, who work together to address the physical, emotional, and spiritual needs of people and their families. 

Understanding the role of each team member can help you effectively communicate your needs and preferences throughout the care process. Upon signing up for care through hospice, all care is directed by the hospice provider. This means you no longer need to work with your primary care provider.

Sometimes this can be difficult, as you may have developed a strong relationship with your primary care team, but they can often be part of the conversations and be kept up to date about your progress. 

This is an important change, though, because the hospice medical team can prescribe the higher level of medications needed to help ensure maximum comfort throughout the process. 

Medication Management May Change

When agreeing to palliative or hospice care, your medication regimen may change. For palliative care, medications can be added to improve quality of life while still undergoing treatments like palliative radiation. Your hospice medical team may actually take away many of the medications you have been accustomed to taking to help keep things more streamlined and focused on quality of life. 

Palliative care and hospice teams are also experts in symptom management, utilizing a variety of medications and therapies to alleviate discomfort and improve overall well-being. Having a personal registered nurse who is your advocate at home can help make recommendations much faster, and help navigate changes that can happen on a daily basis. 

Emotional Support Is Needed

Coping with the impending loss of a loved one can evoke a range of emotions, including sadness, anxiety, and grief. Palliative care and hospice services offer incredible emotional support and counseling to people and their families, helping them navigate the complex emotions associated with end-of-life care

Don’t hesitate to reach out to the care team for support during this challenging time. They often have a chaplain available, as well as local religious heads who are available to come and visit at home or in the hospital. Even for those who are not very religious, this element of spirituality can become critical to address as someone is going through a significant life transition. 

Advance Care Planning Conversations Happen

Advance care planning involves making decisions about future healthcare preferences and treatment options in advance of a serious illness or medical crisis. Palliative care and hospice services can facilitate advance care planning discussions, helping patients and their families articulate their wishes regarding end-of-life care, resuscitation preferences, and other important matters. 

Hospice care does require a change of resuscitation orders, and it is not uncommon for these discussions to be difficult to have as an individual or a family. This decision may take time to reach a unified consensus and understanding, and that is okay. The most important thing is that the wishes of the person at the center of care are always honored. 

Caregiver Support Is Limited

Caregiving for a loved one at the end of life can be physically, financially, emotionally, and mentally taxing. Palliative care and hospice services recognize the vital role of caregivers and provide support and resources to help them navigate the caregiving journey. 

Whether it’s respite care, counseling, or practical assistance, caregivers should feel empowered to seek support when needed. Always take advantage of everything that you can. 

However, what hospice doesn’t tell you is that facility care teams are still limited in what they can do, and can often leave families having to manage providing care on their own, especially at home. 

In this case, it can be helpful to hire a private duty nurse who is familiar with palliative or end-of-life care to also help provide supplemental care. 

Bereavement Services Are Available

The loss of a loved one doesn’t end with their passing. Hospice services offer bereavement support and counseling to help families cope with grief and adjust to life after loss. 

These services may include support groups, individual counseling, and memorial events, providing a compassionate and healing environment for those who are mourning. It is a critical component to hospice care that can be invaluable for a grieving loved one. 

Private Duty Nursing Care Can Help Fill Gaps

In addition to palliative care and hospice services, there are a variety of community resources available to support individuals and families facing end-of-life care

These may include home healthcare agencies, volunteer organizations, religious or spiritual communities, and tapping into local private duty nurses to help. Connecting with these resources can provide additional support and assistance throughout the end-of-life journey. 

Managing a serious or life-limiting health issue with palliative care and hospice services at end of life is a deeply personal and emotional experience. By understanding your rights and what is available to you, you and your loved ones can navigate this challenging time with compassion, dignity, and peace of mind.

Remember, you are not alone – support is available every step of the way. Navi Nurses network of Registered Nurses can come to your loved one’s home and provide specialized healthcare, plus exceptional spiritual and emotional support. Start co-creating your family’s care plan by calling us at (480) 482-1891 or reach out here. You’ll be heard by a medical professional right away.