The Hidden Costs of Dying at Home

Dying at home matters. Currently, around 70% of Americans want to die this way, while only 30% do so.

The statistics vary somewhat with age and health condition. Notably, older patients and those with cancer have a greater chance of dying at home, likely because death is more predictable than earlier in life or for conditions like dementia.

Advance care planning is a crucial part of ensuring such wishes are met.

However, for such planning to work well, we need to be realistic about end-of-life plans. What does dying at home actually look like? Is it always the best option?

Why Die At Home?

The appeal of dying at home is easy to understand. Doing so places the individual in a familiar environment, where they hope to be comfortable and surrounded by loved ones.

Dying at home is even more appealing for people who have lived in the same home for decades. Here, the home offers so much comfort and countless memories.

This is much more appealing than a stark clinical setting with machines and hospital staff, right?

Well… that depends.

Outcomes Vary Dramatically

Some families have good experiences, where loved ones die in a restful environment with their needs met. The family members providing care may even get a sense of purpose and satisfaction from doing so.

Yet, there are also many horror stories, times where things go very badly indeed.

There are a few key reasons for this.

There’s Limited Support for Dying at Home

Despite all the hopes, dying at home can be stressful, painful, and deeply traumatic.

The biggest problem is support, particularly for people with considerable health needs.

The United States does offer hospice at home services, where hospice staff will visit and assist with the dying person’s needs. These services make dying a home possible… but they’re not as powerful as you might think.

Even with a hospice team, family members still need to provide hands-on caregiving support. This may mean having someone available 24/7 to help with tasks like food, cleaning, and toileting.

Some of these tasks are pretty heart-wrenching, like cleaning up after incontinence or giving an aging mother a suppository to help with constipation.

Hospice staff will visit regularly, but they’re not there all the time with you. This means you need to call them if there’s an urgent need or a dramatic change and it may take them time to respond. That’s frustrating if the issue needs an urgent solution.

Getting help from other specialty healthcare staff could be even more difficult.

The Requirements of Caregivers are Huge

Limits in support and fragmented systems mean that family members are left with countless big and small tasks. This is especially true as the end of life nears and seniors may be bed-bound and able to do little for themselves.

Such practical challenges are even more dramatic when the person providing care is a senior or has health issues of their own.

There’s also the time factor to consider. The more support you provide, the less time and energy you may have to emotionally connect with their dying loved one.

Sometimes, it might feel like you’re just the caregiver, rather than being a son or daughter while an aging parent is dying. Losing out on this precious end-of-life time can be devastating and a source of much regret.

Care needs also tend to increase as the individual gets near the end of life. So, the time you most hope to connect is also the time when the most is asked of you.

Caregivers May Burn Out

The large number of tasks can easily lead to caregiver burnout, especially if there is only one primary caregiver. This burnout could make you less effective at supporting your loved one.

The risk of burnout is higher if you’ve been providing extensive care. Like, if you’ve been a caregiver for years with few breaks, there’s a good chance you won’t be able to provide end-of-life care at home as well.

There Are Long-Term Emotional Impacts

The emotional effects of someone dying at home can last for a long time.

There are a few big factors here.

One is any sense of loss, if most of your time was spent providing care, rather than spending time with the senior. This may include some resentment, especially if other family members had more time with your loved one.

Another aspect relates to the location itself. It can be hard to visit or live in a house where someone you care about died.

There are also outcomes due to relationship dynamics. If providing in-home support strained the relationship between you and an aging parent, you may not have found the sense of peace and closure you hoped for.

When Dying at Home Works

For dying at home to work well, the level of support must match the senior’s needs – and most of this support won’t come from hospice.

In particular, you’ll often need someone present with the senior 24/7. They might not need to be in the same room, but they’ll likely need to be in the home to help with emergencies and sudden health needs.

This role is very difficult for one person, especially if the senior needs this type of support for weeks and months. It’s better to have multiple family members involved and perhaps some paid assistance as well.

Getting multiple people involved should give family members the time and space to connect with their loved one, to grieve, and to spend their last moments.

It’s also important to consider the emotional side of the equation.

For dying at home to work well, the family members involved need the emotional capacity to provide care without being overwhelmed. They also need to be comfortable about spending less time by their loved one’s side.

Other Environments Can Be Positive

It’s also worth remembering that despite the challenges, dying in a hospital or a skilled nursing facility isn’t all bad. These environments have skilled nursing staff on hand, people who can quickly respond to any medical crisis, provide pain relief, and much more.

At home, a family caregiver might struggle to get the right pain medication when needed. Or, they may be too exhausted and overwhelmed to respond to the senior’s needs. In a hospital, those challenges are accounted for.

Social workers and community volunteers will often be available too, providing moral support for families. In such environments, family members can choose the moments they spend with loved ones. There’s enough time and space to return home and rest when needed.

The chance to rest gives family members the energy to connect with their loved ones emotionally. To be present during the last days, in a way they couldn’t when trying to provide care.

What You Can Do

Ask Questions and Plan Carefully

Dying at home is still realistic and positive for many people. It’s also something you need to think carefully about.

This includes asking plenty of questions, like the following:

• What specific support does hospice provide? How often will staff visit? What am I responsible for?
• How much support is my loved one likely to need? Can he/she be left at home alone?
• How are care needs likely to change as the condition progresses?
• What equipment and supplies might I need to purchase? Are the costs covered by insurance or do I need to pay out of pocket?

Also think about the emotional, financial, and practical aspects of someone dying at home. What are you capable of? Can other family members help? Will they?

Be Open to Alternatives

If it sounds like dying at home mightn’t be the best option for your loved one, start looking into other approaches. This could involve a hospital, a nursing care facility, or somewhere else – depending on the senior’s specific needs and situation.

Crucially, choosing an alternative to the home doesn’t mean you’ve failed or that the senior’s final days will be worse. Sometimes being in a facility of some type is actually better, as there is plenty of support on hand and the family gets the chance to simply be there, instead of trying to provide care.

There are even some home-like hospice options, including the Jim and Betsy Bryan Hospice Home of UNC Health Care and Hock Family Pavilion. These can be expensive and aren’t widely available, but they’re still great alternatives for some families.

Allow for Changes

Alternatively, you might benefit by starting with an at-home approach, then transitioning if the senior’s care needs become too significant.

This provides the potential for death at home, without placing too much stress on family members.

If you’re considering this approach, talk to family members about transition points. What are the signs that your loved one needs to move to another environment? How can you manage the transition well?

For example, you might aim to transition the senior when it is obvious that their care needs will quickly become too much. This way, you can get them settled in a new environment before things get too bad.

Have Honest Conversations

Gentle and honest conversations are a crucial part of end-of-life planning. This includes talking about the practical aspects of what people want, the values at play, and any emotional implications.

Remember, family members may have very different perspectives. It can also take time to get to the truth of the matter, especially when there are a ton of emotions to work through.

Final Thoughts

Dying at home remains an ideal for many seniors. Yet, the experience can often be much more difficult and devastating than it first seems.

Because of this, it’s crucial to take your time with the decision. Think carefully about the senior’s health needs and whether it’s realistic to support them at home.