“Respect,” like the word “practice,” is both a noun and a verb, with many different uses. Some of those uses include: in reference or regard to something (With respect to the current situation, I can see your point); an aspect or detail (This is a good plan in some respects); to hold in esteem (We paid our respects at the memorial service); to refrain from interfering (Please respect her privacy); thoughtful consideration with kindness (I hope my family will respect my final wishes. This post will focus on the last example because “thoughtful consideration with kindness” sets the stage for successful relationships in general and is especially true for patient/caregiver relationships in the hospice setting. Four facets for consideration are self-respect, mutual respect, respect as it relates to dignity, and respect for final wishes.
Choosing wellness through the practice of respect begins with the self. To preserve and practice bodily self-respect we can engage in simple daily activities such as exercising, mindful eating, resting when tired, or attending to healthy hygiene and grooming routines. Self-respect also means taking the time to listen to our innermost mental, emotional, and spiritual needs and taking steps to honor or fulfill those needs. If we treat ourselves with respect (i.e., thoughtful consideration with kindness), we can be better equipped to meet life’s ups and downs when the going gets rough.
If we are out of step with our own personal values or our needs are continually unmet, self-respect along with self-care can falter and in extreme circumstances morph into despair, depression, or self-loathing. If this happens, it’s time to re-evaluate with the help of a counselor, coach, therapist, or support group. Caregivers especially, please take note: if you are slipping into the doldrums because your life of service is overwhelming, it is an act of courage and self-respect to seek supportive counsel.
We seek mutual respect in our relationships with others through things like authentic presence, lending a helping hand, careful listening, telling the truth, asking forgiveness, apologizing, seeking to understand, expressing gratitude or appreciation, and honoring each other’s boundaries with empathy. The intentional practice of empathy can be learned and will help us to foster mutual respect with others. Mutual respect means being able to find middle ground, make compromises that are mutually beneficial, and sometimes agreeing to disagree. Mutual respect does not mean that one must release their perspective or values to acquiesce to another’s. It does mean to communicate in ways that preserve shared kindness, love, and compassion to the highest degree possible, while crafting a plan of action that reflects an acceptable, dignified compromise for both parties.
When addressing patient and caregiver roles in a hospice or palliative care setting respect and dignity go hand in hand. Dignity comes from the two Latin words dignitus (merit) and dignus (worth). It is a described as a universal need, fundamental to the well-being of every human being relative to a sense of worthiness, merit, or value; and to feel deserving of respect. Medical texts describe dignity as having four defining aspects that are each multidimensional in and of themselves. These aspects include respect, autonomy, empowerment, and communication.
Hospice patients, as well as anyone who is medically vulnerable, may feel that maintaining dignity and garnering respect is a difficult or discouraging task. Patients may equate the loss of physical wellness or strength, situational control, or personal agency with a lack of self-worth and therefore declining dignity. Family, friends, and caregivers can foster and support dignity through respectful interactions and communication. This excellent article from Samaritan’s Blog offers valuable insights about the importance of maintaining patient dignity in the hospice setting.
Hospice patients have a natural right to dignity, privacy, and to have their final wishes respected and upheld. Those final wishes include instructions about medical and personal care, social interactions, and spiritual-emotional support. Ideally the wishes are recorded in writing via a living will or preferably the more detailed, Five Wishes. This “living will with heart and soul” is a legal document that includes a designation for a representative to uphold the wishes, and explicit instructions about life supportive measures; pain management; comfort care; and personal messages to loved ones. Medical personnel, caregivers, family, and friends are bound to honor and respect the guidelines described in a living will.
Hospice patients can always communicate for themselves if they are able to do so but having a representative to respect and uphold final wishes is of utmost importance in case the patient cannot communicate. The representative may also be called the medical power of attorney (POA), proxy, or designee. They should have a comprehensive understanding of the final wishes, addressing any questions before a medical condition precludes that. Retaining a copy of the wishes for reference is standard, as is the willingness to carry out instructions when necessary. Representatives have the moral and ethical responsibility to follow the patient’s wishes and should decline serving in that role if there is any question as to willingness or ability to respect the patient’s wishes. Representatives can serve as gatekeepers or guardians for the patient’s dignity, privacy, and peace in final hours and days.
Despite the well-intentioned actions of caregivers and a diligent representative, hospice settings can become emotionally charged. Situations where patients and caregivers clash about heroic measures, personal care, privacy, medications, visitor access, eating, drinking, and philosophical or religious practices are more common than one would guess. These disagreements likely stem from the caregiver’s desire to relieve suffering by offering gestures that are not in alignment with the patient’s needs. It is important to remember that the patient may be experiencing any of the six stages of grief described by Dr. Elisabeth Kubler-Ross and David Kessler. They are also saying goodbye to everything they have known in life and preparing for whatever they feel may be “next.” That is a lot to process! Their need for talking or silence; eating or not; sleeping or not; praying or not, etc. is the high priority and their wishes should be always respected.
As you can see, creating final wishes requires some planning ahead and ongoing communication between patients and caregivers. Whether we are in great health or medically vulnerable, now is the time to put final wishes on paper. Having a living will in place will relieve the burden of decision making for dear ones if an unforeseen critical situation arises. Having the conversation before entrance to hospice care will provide comfort and reduce suffering for everyone in the circle of care. It is a respectful gift to offer loved ones.
In conclusion, living well is enhanced through the practice of thoughtful consideration with kindness! This is a form of respect that you can easily offer to yourself and others in numerous situations. Just for today, try to take one small action that will support your own dignity and self-respect. If you are caring for others, consider an act of respect to support their feeling valued and worthy of love.