Palliative Care: Finding Comfort and Dignity

“It’s not how much you do, but how much love you put in the doing.”

-Mother Teresa, missionary

Love is the most powerful emotion one can give to another.  In this article, we are going to explore how palliative and hospice care reflect the most beautiful forms of tender loving care to loved ones who are either seriously ill, chronically ill or terminally ill.

By describing what palliative and hospice care services provided, you will have a better understanding of the options available to you to make this the most meaningful experience possible, for you and your loved one, ensuring that the patient has the best comfort treatment possible, enabling him or her to truly feel cared for with honor, dignity, and regard during this life-altering experience.

In our youth-oriented society, getting sick or dying is not looked upon as an “acceptable” part of life.  In fact, sometimes a sense of shame occurs in being perceived as “weak” when ill, not only by the patient himself/herself but also by the family, as if somebody did something “wrong”.  Palliative and hospice care teams do not judge the ill person. They actively treat that person with the utmost of care, with the goal of alleviating as much pain and discomfort as possible, honoring that part of the human journey.

Regardless of the time frame a person may live, planning for terminal care is one of the greatest acts of love that can be expressed, and with palliative and hospice care being the greatest forms of support one can give to another at this tender time in life, it shows how much we care about making the last years, months, weeks or days the best last years, months, weeks or days possible.[1]

What is Palliative Care?

First, we need to define palliative care, so that you understand the enormity of this service.  When people have a serious illness, such as cancer, heart disease, lung disease, kidney disease, Alzheimer’s and other serious, chronic or terminal illnesses that debilitate them, they need assistance physically, emotionally, mentally and spiritually.  Many times, the family is not prepared for such a journey, and do not know what to do or how to care for, or take care of their seriously ill loved one.

When someone is seriously ill and is pursuing a cure, palliative care focuses on relieving symptoms associated with that patient’s condition, while receiving active treatment meant to cure his or her illness.  The concept of palliative care and pain management are medical specialties that provide comfort during serious, chronic and terminal illness, but it is so much more than that.  Their specially-trained team of doctors, nurses and other specialists working together, provide that extra layer of support to improve the quality of life, relieving symptoms and distress, helping to better understand the disease and diagnosis, helping to clarify the desired treatment goals and options, understanding and supporting your ability to cope with the illness, assisting you and your loved one in making medical decisions and coordinating with the other doctors on the team.

When treatment is no longer curative (usually during the last 6 months of life), then hospice steps in.  We’ll talk about hospice a little later in the article.  It’s important to understand that both services were created to assist the seriously chronically or terminally ill person with the greatest of regard.

Remember, palliative care guidelines focus on relieving symptoms and stress associated with the patient’s serious illness and condition with the goal to improve the quality of life for both the patient and the family, while still receiving active treatment through different phases of their life-limiting condition, like controlling side effects of cancer treatments, nausea, loss of appetite, difficulty sleeping, shortness of breath, fatigue, constipation or other symptoms that plague the patient, helping to carry on with daily life, even improving the ability to go through the medical treatments being administered.

Palliative care can be received in the home or during short-term hospital stays, and it’s important to know that one can receive palliative care at any point in an illness and the patient does not have to give up his or her own doctor, as the palliative care team works in partnership with the primary doctors, offering support to them as well.

What is Palliative Care vs Hospice Care?

Palliative Care: Finding Comfort and DignityThe difference between palliative and hospice care is one can receive treatment for the disease they are living with, and have palliative care at the same time in a hospital or at home, as mentioned above.  Hospice care does not consider treatment for the disease an option, and creates the best comfort care possible, without a curative goal in mind, making sure the patient is as pain-free and comfortable as possible all the way to the “end” of the physical journey.[2]

 

Palliative and hospice care both offer compassionate care for patients with life-limiting illnesses.  While palliative care is a component of hospice care and can be used as a separate area of medical practice, while the patient is receiving treatment, offering specialized treatments for management of pain and symptoms to enhance the quality of life for the terminally ill patient and the family.  In both, a highly skilled palliative/hospice team of doctors, nurses, social workers, spiritual counselors, dietitians and pharmacists all work together to provide the most excellent care possible, specially designed for the individual patient.

Being diagnosed with a life-limiting illness can create a lot of uncertainty and anxiety within families.  Both palliative and hospice care staff help patients and families develop coping skills and ease worries about the progressive nature of whatever disease they are experiencing through gently educating the patient and the family, teaching them not only about the disease and its symptoms but how to care for the symptoms and alleviate pain and discomfort.

Palliative and hospice care teams create an environment of safety, empowering all family members and loved ones to ask questions and find the answers to their questions.  Each patient is treated as a unique individual, taking into consideration his or her condition, while always emphasizing comfort and dignity, regardless of faith or religion or culture.

It’s important to note that one of the major misconceptions about hospice care is that people are giving up on life.  Surrendering to the journey and giving up on life are two different things.  Having hospice offers an opportunity to increase the quality of life, allowing the patient and the family to make informed choices, serving as their personal support team.  Another wonderful aspect of palliative and hospice care is that Medicare, Medi-Cal, Medi-Caid, and most private insurance plans, provide benefits for palliative and hospice services, and if financially strapped, the social workers will work on financial aid.

Remember that both palliative and hospice care offer compassionate care and provide comfort care to patients with life-limiting illnesses, but keep in mind that palliative care (which is always a component of hospice care) can be used as a separate area of medical practice, while the patient continues receiving treatment[3] and hospice care begins after treatment of the disease is stopped, when it is clear the person is not going to survive the illness.  Let’s dive a bit further into hospice care.

What is Hospice Care?

Palliative Care: Finding Comfort and DignityHospice care includes palliative care, and as mentioned, addresses the patient’s physical, emotional, mental and spiritual needs.  Hospice care also helps with daily activities, like administering medications, bathing, and dressing, but does not provide full-time caregivers.  Hospice care is reserved for terminally ill patients when treatment is no longer curative during the last 6 months of life, assuming the disease takes its normal course, focusing on comfort and quality of life, rather than cure, with the goal to have an alert, pain-free life… to live each day as fully as possible.

Both palliative and hospice care treat the whole patient and the family, offering psychological and spiritual counseling[4]

National Hospice and Palliative Care Organization (NHPCO )[5]

As with any new movement or field, an association is formed to raise and maintain the standard of service in that field. The National Hospice and Palliative Care Organization (NHPCO) was created in 1978 improving end of life care and expanding access to hospice care with the goal of profoundly enhancing the quality of life for people dying in America & their loved ones.  Being advocates for the terminally ill and their families, the NHPCO develops public and professional educational programs & materials to enhance understanding and availability of hospice and palliative care.

The NHPCO is the largest nonprofit membership organization that represents hospice and palliative care programs and professionals in the United States.[6]  When I attended my first NHPCO conference in 2009, over 2,000 people were there representing hospices throughout the country.  As a coach for the dying and their loved ones, I felt as if I had just come “home”, finding my “tribe” of people who felt comfortable talking about caring about people with serious illnesses who were dying.

It Takes a Village: How Hospice Works Side by Side with Palliative Care

This is a partnership/team approach working together with the caregiver, coach, family, and doctors, as well as the patient center. It’s an interdisciplinary model which provides support when you need it the most, spending time, communicating every step of the way.  You can answer a quiz given on to find out if palliative care is right for you or someone you love.[7]

Hospice works side by side with palliative care personnel, whose mandate is to improve the quality of life for patients and families facing serious or chronic illness.  Through education and multi-disciplinary doctors, nurses, coaches, psychologists, social workers and other allied health personnel, all dedicated to optimizing the quality of life by anticipating, preventing and managing to suffer from the time of diagnosis throughout the course of treatment, all the way to the end with care.[8]

The unique quality about palliative and hospice care is they are both patient-centered, delivered by an interdisciplinary team of physicians, nurses, social workers, chaplains, and other practitioners to address the physical, intellectual, emotional, social and spiritual needs of patients and their families with a patient-centered focus.

Having a team of people to help you, the caregiver is one of the best support systems you can have.  The whole notion of what is behind the caring is extremely important, because, as caregivers, you care so much, you sometimes lose yourself, and, it is important to know that so that you can care for yourself first.  It’s like putting on the mask first in an airplane when the pressure is low.

How to care for someone who knows he or she is dying

How to care for someone who knows he or she is dying

When people we love are dying, it’s important to remember that it’s their journey, their experience, and it’s up to us to make it the best experience possible.  Here are some key points to remember:

  • Honor his or her choices.  It’s not about you!

My friend, Toni, was probably one of the most spiritually oriented human beings I ever knew, and yet, when she was diagnosed with breast cancer, she only wanted to go the medical route, with surgeries, radiation, and chemotherapy.  This was her choice.  Many people who loved Toni offered her healing of all kinds and she respectfully rejected their offers.  For whatever reason, she chose to go strictly the medical path, no matter what anyone said.  I, as her coach and death midwife, honored her choices and supported her in every way. It was not up to me to change her mind, but only to let her know that her choices were honored and that she was supported on her journey with great love and honor.

  • Keep your fears in check.  

When Toni’s husband, Gene, was dying of Parkinson’s, hundreds of his students wanted to visit him. I created a sacred living environment in his home for him to die, with a sense of peace, and suggested that everyone check their fear at the door and they could pick it up on their way out.  (Many times, we impose our own fears on a dying person and then they become fearful, even if they weren’t before).

  • Be present.  

Before seeing your loved one, make sure you let go of any problems you had during the day, and let yourself really be present with them.  Even if they are unable to communicate, your silence is powerful and your presence is felt.

  • Have a support team in place.  

Take advantage of the services offered by palliative and hospice care organizations.  You do not have to do this alone.  You need support, as well as your dying, loved one.  This is not a time for you to think you can handle it all.  This is a time for you to get the care you need for yourself and for your loved one.  You will never regret having a palliative or hospice team in place and will feel grateful you did.

There once was a 70-year old man who told his friend he just found out from his doctor he was going to die.  His friend asked him, “Why did it take you so long to find out?”  We sometimes think we are going to get away with not dying… that it only happens to other people.  Getting sick and dying happens to everyone.  No one is getting out of here alive, so make the best of the time you have with your loved ones.

Summary

Facing the end of someone’s physical life, especially of a loved one, is challenging in and of itself.  Just the emotional side is one thing, and the physical side is quite another side… one for which we are not often prepared.  Not only are you experiencing the anticipated loss of someone you love, but not knowing how to handle it accelerates the anxiety.  Let a coach and other specialized people help you.

It takes special people to care for people who are dying.  It takes people who can expose themselves to the experience of death and be dying, day in and day out, caring for the people and the experience with exquisite care, and it does take a village of support.  Palliative and hospice care services are so important in creating a feeling of safety in an environment infused with honor, dignity, and regard.  Now is the time to call in the troops, to call in your friends and support teams to rally around you and your loved ones, and if it’s time to call in palliative and hospice care, then do so.

Palliative and hospice caregivers are human beings committed to bringing comfort to the patient and the family during this journey with the utmost honor, dignity, and regard.    The palliative and hospice care teams are your support teams of people, that not only support your loved one but support you on your journey of caring for your loved one and yourself.

These trained caregivers can be from all walks of life and even different cultures.  What they all have in common is their desire to CARE for the patient, the family, and loved ones.   How do caregivers seamlessly integrate their skills, their knowledge and still be genuine and sincere, holding the space for others?  They do it with great care and with love.

Conclusion

In this article, we talked about what palliative and hospice care mean to someone who is serious, chronically or terminally ill, and how this affects his or her family members and loved ones.  We’ve described the difference and similarities between palliative and hospice care, and how your loved ones can have the best comfort treatment possible, feeling they are honored, given dignity and regard during the experience. I’ve shown you – regardless of the time frame a person may live, how planning for terminal care through palliative and hospice care is of great importance.

I hope that you now have a better understanding of the options available to make this the most meaningful experience possible for you and your loved ones.  Human beings want to know that they matter.  What better way of showing how much they matter than to provide a team of people specifically caring about you and your loved ones!

It’s your life.  Enjoy the journey. And, remember to bring love into everything you do.

image5

References:

[1]  http://www.growthhouse.org/cancer.html

[2] https://www.hospicesect.org/hospice-and-palliative-care

[3] https://www.hospicesect.org/hospice-and-palliative-care

[4] https://www.hospicesect.org/hospice-and-palliative-care

[5] http://www.nhpco.org/nhpco-0

[6] Founded in 1978 as the National Hospice Organization, and in 2000, including palliative care.  Defined by the World Health Organization in 1990, palliative care seeks to address not only physical pain but also emotional, social and spiritual pain to achieve the best possible quality of life for patients and their families.  Its mission is to lead and mobilize social change for improved care at the end of life with a vision of a world where individuals and families facing serious illness, death and grief will experience the best that humankind can offer.  Its values are service, engaging customers, respect, honoring others, excellence, exceeding expectations, collaboration, fostering partnerships, stewardship, managing resources. (www.nhpco.org)

[7] https://getpalliativecare.org/rightforyou/

[8] https://csupalliativecare.org/palliativecommunity/what-is-palliative-care/