A Guide To End-Of-Life Planning

Updated

Contributing writer

My high school requires all students to take living skills before they graduate: a class designed to prepare us for adulthood after college. It teaches us about taxes, family planning, and more. 

But the one key topic they miss is one that every single person will need: end-of-life planning. Just like family and taxes, it’s something that we will have to do, so why don’t they teach it? I couldn’t find the answer, so I set out on my own quest for more information. 

I found that although subject matter experts wrote many medical studies and articles, few were available from the perspective of the family who lost a loved one or someone from Gen Z or younger. Most of these articles focus on medical perspectives and I couldn’t find any that helped young people and their families understand what to expect about the end-of-life process. 

In March of 2021, I joined Cake (joincake.com), the largest end-of-life planning website in the world, serving 40 million people per year, and have interned there since. This article is from my perspective as a high school girl trying to learn more about end-of-life planning. I came to see that preparing for the end of a person’s life and learning about what happens after loss is not an arduous task but a way to express love for your family. 

WHAT IS END-OF-LIFE PLANNING?

End-of-life planning is making decisions and getting your affairs in order to prepare for when you pass away, including decisions about property, healthcare, digital presence, finances, and more. 

While end-of-life planning is about yourself, others are almost always involved. Family, close friends, physicians, and any institutions with whom you have relationships can be of great help when making these plans and can play a crucial role in your decisions. 

Planning allows everyone involved to have an easier time when we approach death, and it is best to start in advance of a health event because many people struggle to make difficult decisions when they are in a state of duress. Similarly, if you plan in advance, your loved ones will not have to worry about decisions while mourning or dealing with grief.

Talking about the end of life can be daunting. However, addressing it head-on can bring about unmeasurable benefits. Patients who have reflected on their end-of-life wishes are more likely to accept their prognosis and illness [12] and are more likely to be aware of their healthcare options. They may opt for less aggressive medical treatment, such as resuscitation or admission to an intensive care unit, and they may enroll earlier in hospice programs. Some may also feel less guilt about dying, and loved ones can be relieved of some of the stresses of decision-making and instead can spend more time enjoying being with their loved ones and honoring their lives with their presence [8]. This type of planning may alleviate unnecessary pain and discomfort, improve quality of life, and provide a better understanding of decision-making challenges for a person and their caregivers.

 

Contrary to some fears having these end-of-life conversations can be taxing. A study [12] found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders. Instead, the worst outcomes were seen in patients who didn’t report having these conversations. 

While it may be hard to talk about end-of-life at first, having these talks can truly help all those involved. Those who reported having end-of-life conversations with their physicians at baseline received significantly fewer unnecessary medical interventions that caused more suffering. Patients who received aggressive medical interventions had worse quality of life in the final week of life, so there can be a tradeoff between quality of life and extension of life. Caregivers of patients who received aggressive care were at higher risk for developing a major depressive disorder, experiencing regret, and feeling unprepared for the patient’s death, compared with caregivers of patients who did not receive aggressive care [12]. The above is true for having end-of-life conversations with doctors or specialists.

Shows steps to include in creating a end-of-life plan

 

WHAT SHOULD BE A PART OF AN END-OF-LIFE PLAN?

End-of-life planning encompasses not only what people want to have done with their assets, but also other factors, like how a person may want to approach medical and comfort care. 

When making these decisions, there is a multitude of things to consider. One is weighing the potential tradeoff of spending the end of your life with extensive medical intervention to prolong life versus trying to be as comfortable as possible. Another is setting: whether you would be content to be in a medical setting or at home surrounded by loved ones. Extensive medical intervention can help prolong life, however, it is important to consider that a good portion of this time may be spent in pain or connected to medical devices that may take away independence or other aspects of living that might be important to someone. Choosing comfort may result in a shorter life, but it may give you to have more control and enjoyment of your final days. 

MEDICAL CONSIDERATIONS

venn diagram comparing palliative and hospice care

Most people have heard of palliative and hospice care but there is significant confusion about what these terms mean. 

Palliative care is specialized medical care for people living with a serious illness. It’s often mistaken for hospice care, but hospice care is a form of palliative care that’s administered later in the progression of diseases. Palliative care focuses on relieving the disease's symptoms and stress and includes support advice, advance care planning, and referrals to other doctors. The goal is to improve the quality of life for both the patient and the family; some may even argue that this should be the goal of all healthcare. 

There’s often a stigma surrounding palliative care that it’s “giving up” or that one cannot pursue curative treatment simultaneously. In reality, people can enter palliative care at any time, from diagnosis to the final days, and pursue curative treatment at the same time. Some people also believe that palliative care can only be given to cancer patients, but in reality, it’s available for anyone living with a severe illness. Over time, if doctors believe that further treatment will not benefit the patient, palliative care can transition into hospice care or the care team can continue with palliative care with an emphasis on comfort. Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics, and other specialized clinics, or at home.

Palliative care takes a holistic approach to care, encompassing both the physical and emotional well-being of a patient. In a randomized trial of patients with lung cancer, those assigned early palliative care experienced a better quality of life and fewer symptoms than those that did not and received standard care.

Hospice care is different from palliative care in that it focuses on the care, comfort, and quality of life of a person with a severe illness who’s specifically approaching the end of life. At some point, it may not be possible to cure a severe illness, or a patient may choose not to undergo certain treatments. Hospice is designed for this situation. In hospice, attempts to cure the person’s illness are stopped, with a life expectancy of around six months. Hospice can be administered anywhere the person calls home, such as residential facilities, assisted living, or nursing homes.

Both hospice and palliative care provide an extra layer of support and comfort care to a patient suffering from a serious illness. And both forms of care are designed to respect a patient’s autonomy, ease pain, and other symptoms, and advocate for a person’s illness, quality of life, and spiritual wishes.  

Doctors, nurses, and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care, and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the program. 

NUTRITION

A key factor in end-of-life care is nutrition. Adequate nutrients give individuals energy to thrive and improve their quality of life, aiding skin elasticity, weight management, and more. However, the ANA (American Nurses Association) recognizes that nurses caring for a patient who is at the end of their life must determine those situations when nutrition and hydration can no longer benefit a patient. They also have to adhere to clinical standards that include providing nutrition and hydration only to patients for whom it is indicated. ​​In some cases, the continued provision of calories and fluid can no longer benefit a patient, and in fact, can cause harm. 

For example, patients nearing the end of life have decreased caloric needs. Continuing fluid and calories based on prior intake can lead to edema, heart failure, and pulmonary congestion. It is important to understand that when patients refuse food or water, it is best to let them choose and allow them to die with purpose and grace. 

WORKLOAD FOR PRIMARY CAREGIVER

Suppose palliative or hospice care is administered at home. In that case, the primary caretaker, who is most often an immediate family member, is responsible for many things, such as the personal care of the patient, including bathing, changing clothes, feeding, as well as administering medicine, changing bandages, and knowing how to use medical equipment. 

Most of these primary caregivers are considered informal caregivers if they are unpaid, and there are approximately 65.7 million informal caregivers in the United States. Caregivers provide an average of 8 hours of daily assistance which can result in burden, strain, and poor physical and psychological health, particularly as their care recipients near the end of life. Even if they are not the primary caregiver, young people can play a role in the patient's end of life either explicitly or inexplicitly and can often be impacted.

Many companies only provide supplies, and physical help is scarce; this creates a crisis since people often need help around the clock. Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days. Throughout all of this, asking for help from family and friends, getting adequate sleep, and taking full advantage of what the companies provide can help ease the strain of being a primary caregiver. Furthermore, there is an increasing number of death doulas who can help guide a family through the final days. Death doulas don’t often get involved in the medical side of things, but will help a family and individual emotionally, spiritually, and practically.  

COST

While palliative care may seem expensive, it can decrease the total cost spent on healthcare. A study in 2017 has shown that receiving palliative care costs an average of around $95.30 per day — which was less than half the cost for those without palliative care — $212.80. Furthermore, receiving palliative care reduced the cost of healthcare by $1285-$20,719 for inpatient palliative care in a different study compiling data from 2008 to 2018, $1000-$5198 for outpatient and inpatient combined, $4258 for home-based, and $117-$400 per day for home care or hospice, combined outpatient/inpatient palliative care.

POST LOSS

What is post-loss? Post-loss is the phase of time after someone has passed, including grief and all the administrative tasks that have to get done. Post-loss tasks include planning funerals, informing others, filing death certificates, canceling subscriptions, taking the will through probate, and insurance. These tasks can span anywhere from a few days to a year and can often take over hundreds of hours to finish.

In addition to being strenuous, it is compounded by the fact that it is often done by loved ones that are also dealing with grief. Finding support and resources is essential when dealing with grief and post-loss tasks. Support can come in many forms, including friends, grief counselors, support groups, and online platforms like Cake. It’s important to give time to feel the pain and not rush the process of anyone's grief process, including yours. The loss of a loved one affects not only yourself but the whole family, and everyone will inevitably deal with grief differently. Roles in the family may change and holidays and events will not be the same. Coming together to talk about such topics while giving each other the space or support they need will become crucial in navigating this new world without your loved one. 

Among Cake users, in a survey conducted on Instagram, out of those who helped plan a funeral of a loved one, the majority, 56%, helped with arranging the direct funeral. Other common tasks included creating photo memorials, and video memorials, scanning photos, leading prayers, creating slideshows, writing the eulogy, coordinating with the funeral director, and helping with the photo display. 

Compared to end-of-life planning, post-loss tasks remain uncharted territory for many young people. In a poll conducted by Cake, there was an equal distribution among those that are not familiar with post-loss planning, those that learned about post-loss planning after navigating their own loss, and those that have always known it's an option, meaning that roughly ⅓ of those that answered didn’t know much about post-loss. 

Shows tasks to do in post loss

CONCLUSION

I hope that this informal guide to end-of-life planning will reach a large audience and spread the importance of starting end-of-life planning earlier. Just like they teach how to plan for families and to live in real life at school, I believe that schools have the same obligation to teach topics related to the end of life because everyone will need to understand this, and it is a great opportunity to learn how to access resources. 

Not only is it a way for people to show their love towards loved ones, but I also believe end-of-life planning is important so we all know what to anticipate when these times come and can give a piece of life to those left behind.


References

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